1. health and fitness
2. disease
3. aids and hiv

 Secondary HIV Transmissions via Newly
Diagnosed HIV Positive Men Who Have
Sex with Men (MSM) in Shenzhen,
China—a Qualitative Study
LI, Haochu
A Thesis Submitted in Partial Fulfilment
of the Requirements for the Degree of
Doctor of Philosophy
in
Public Health
The Chinese University of Hong Kong
September 2012 Thesis/Assessment Committee
Professor Samuel Yeung Shan Wong (Chair)
Professor Joseph Tak Fai Lau (Thesis Supervisor)
Professor Eleanor Anne Holroyd (Thesis Supervisor)
Professor Maria Siu Mi Tam (Committee Member)
Doctor Amy Po Ying Ho (External Examiner)
ii
論文評審委員會
黃仰山教授 (主席)
劉德輝教授 (論文導師)
Eleanor Anne Holroyd (論文導師)
譚少薇教授 (委員)
何寶英博士 (校外委員)
iii
Abstract (English)
Secondary HIV transmissions via newly diagnosed HIV positive men who have sex
with men (MSM) in Shenzhen, China - a qualitative study
LI, Haochu
Doctor of Philosophy in Public Health
The Chinese University of Hong Kong September 2012
Introduction
Newly diagnosed HIV positive men who have sex with men (NHIVMSM) play an
important role in accelerating the high HIV prevalence in China. This ethnographic study,
employing a modified social ecological model integrating concepts of adaptation, cognition,
affect and action, investigated the inter-related issues on secondary HIV transmission,
mental health and services utilization in this population. Methodologies included in-depth
interviews, focus groups, informal interviews and participant observations. Moreover,
information was also obtained from volunteers and health care workers. Thematic content
analysis was performed.
Results
Most respondents commonly experienced psychological or mental health problems
iv
(e.g. depressive symptoms and anxiety) after their HIV diagnosis. HIV stressors, such as
constraints of being HIV positive, limited information and knowledge of HIV/AIDS, ART and
its side effects, associated co-morbidities and significant costs in health care, appeared to
shape their adaptation to the diagnosis. Moreover, a syndemic was apparent among
NHIVMSM and some influential psycho-social and cultural conditions, such as adversities in
their migrants’ life, social suffering as MSM, cultural trauma, stigma and discrimination. Most
respondents drew on a range of personal resilience strategies and some respondents
testified to have achieved post-traumatic growth. Resilience was presented within a
person-situation interactional construct.
Eleven (24.4%) respondents reported practicing unprotected anal intercourse (UAI).
Several respondents reported their UAI had occurred in the first few months after their
diagnosis when they suffered considerably from uncertainty, perceived stigma and identity
struggles. Factors associated with UAI were based on differing partner types, such as fear of
losing partners in a context of non-serostatus disclosure in lovers or stable partners, tongzhi
(gay) sauna setting and moral judgment in casual partners, and poor economic status in
commercial partners. UAI usually happened simultaneously in context of substance use, risk
misconceptions, encountering negative emotion or mental health problems. Positive factors
against UAI included social support, self-care, self-protection and volunteerism.
The current top-down public health services tended to operate on control and
surveillance instead of empowering MSM. This approach largely ignored psychological and
mental health, sexual health and self-care capacities among NHIVMSM, whose unmet
needs were identified as preferring to obtain services and support from MSM and/or PLWH
communities. However, current MSM organizations lacked funding and technical support.
Health care providers operated with suboptimal care protocols, training and technical
v
support. Coordination and collaborations among health care institutes and MSM
communities were relatively weak. Tailored participatory health care is warranted, such as
volunteerism, greater involvement of PLWH, health navigators and building supportive
environment and services.
Conclusions
The problems of psychological and mental health, risky sexual behavior (UAI) and
health services utilization that NHIVMSM encountered resulted from interactions between
personal experiences and the social ecological systems they inhabited. Recommendation
drawn include
adopting a comprehensive and inclusive “healthy MSM community”
approach and a strategy of facilitating self-care to carry out culturally sensitive and socially
effective measures to prevent secondary HIV transmission and to promote wellbeing
among NHIVMSM. An emerging theoretical implication is that the nonlinearity of human
behaviour requires paradigm shifting from a bio-behavioural emphasis to the social origin
of HIV/AIDS.
vi
Abstract (Chinese)
中國深圳新感染 HIV 的男男性行為者中 HIV 二代傳播問題的定性研究
李浩初
公共衛生 哲學博士
香港中文大學 二零一二年九月
介紹
愛滋病在中國男男性行為者中的流行持續增長，而新感染 HIV 的男男性行為者扮演著
重要角色。本民族志研究採用了社會生態模式來探討與新感染 HIV 的男男性行為者中 HIV
二代傳播、心理健康、以及使用健康服務相關的問題。研究方法包括深入訪談、焦點小組訪
談、非正式訪談和參與觀察。此外還採訪了志願者和醫護人員。資料分析採用主題內容分析
法。
結果
在確診為 HIV 呈陽性後，大多數的男男性行為者經受過一定程度的心理及精神上的問
題。與 HIV 相關的緊張性刺激影響著他們適應這個確診。HIV 與一些重要的心理、社會和文
化的條件呈現一種綜合流行。而大多數的男男性行為者通過自身的應變能力逐漸康復，其中
一些人甚至體驗到某種程度的成長。人的應變能力是一種基於個人與環境互動的建構。
11 名（占 24.4%）HIV 呈陽性的男男性行為者報告發生過無保護的肛交行為。基於性
伴侶的不同類型，與無保護肛交行為相關的因素則有所不同。這些無保護的肛交行為往往同
vii
時伴隨著物質濫用、對風險的錯誤認識、以及消極的情緒或者心理和精神問題。阻礙無保護
肛交行為發生的積極因素包括社會支援、自我保健、自我保護和志願服務。
自上而下的公共衛生服務傾向於控制和檢測而不是賦權于男男性行為人群，並且在很大
程度上忽視了新感染 HIV 的男男性行為者的心理和精神健康、性健康、以及自我保健的能
力。新感染 HIV 的男男性行為者的未滿足的需求已經被識別，且他們更願意到男男性行為人
群的社區，尤其是感染者小組那裏去尋求服務和支援。但男男性行為人群的草根組織卻缺乏
資金和技術的支持。
結論
新感染 HIV 的男男性行為者所遭遇的問題都植根於特定的個人際遇以及他們所生活
的社會生態系統。是時候採取一種廣泛而綜合的“健康同志社區”的觀點、促進自我保健的策
略、以及具有文化敏感性和社會效能的措施來預防 HIV 的二代傳播以及促進新感染 HIV 的
男男性行為者的社會福祉。人類行為的非線性的特徵要求愛滋病健康行為研究從強調生物行
為的範式轉移到著重愛滋病的社會根源的範式中來。
viii
Acknowledgements
Through out these years (2008-2012) of study, conducting research and writing up
this dissertation, I have received numerous support, guidance and encouragement from a
lot of people. I would like to acknowledge these people for their valuable input in my study
and dissertation.
I would firstly like to express my sincere gratitude and deep appreciation to my
advisors—Prof. Joseph TF Lau and Prof. Eleanor Holroyd. In my PhD research, they
provided very patient and invaluable guidance, advice and comments. They spent
countless hours reading and commenting on my writing. I also express my gratefulness to
Drs Winnie Mak, Jean Kim, Eliza Wong, and Huso Yi for their advices and helps. I would
also like to say thanks to other professors, staffs and students, especially boys and girls in
Room 509, the Jockey Club School of Public Health and Primary Care at the Chinese
University of Hong Kong. I felt so happy to have them around.
I would like to express my great thanks to my informants and respondents in
Shenzhen. The research would not have been possible without their support and
cooperation. I am so grateful that my respondents generally shared with me their life
history, experiences and feeling very in depth. When I encountered difficulties in my
fieldwork, some respondents were very kind to help and cared about me. I would never
forget the ones who helped me in housing, I would never forget the ones who took care of
me in taking bus back home, I would never forget the one who invited me to attend his
marriage party, and I would never forget the ones who calmed me down when I was
frightened by two robbers. The fieldwork in MSM communities in Shenzhen is not just
about a research, but more meaningfully about a very positive experience in my life.
ix
Shenzhen CDC and their staff were generally open minded in this study and provided me a
lot of support without any conditions, even though some of my arguments may criticize
their works in some sense. Mr. T, SRW, HPG and its volunteers and peer workers provided
my numerous helps and supports. They were really very kind to me, and I cannot help
taking myself as a member of them.
I would like to express my thanks to Drs Kenneth Mayer, Judith Bradford, Steven
Safren, Conall O’Cleirigh, Matthew Mimiaga and Aimee Wagenen in Fenway Community
Health in Boston, United States, for their insightful advices. I was also grateful to Rodney
VanDerwarker, Jon Vincent, Coco Alinsug, Kelvin Powell, Daniel Tu, and Ms. Sue Johnson
for their warmly helps and care, when I was in Fenway Community Health. I would also like
to express my thanks to professors and students in Department of Anthropology at CUHK.
They discussed with me openly when I conducted a presentation about my PhD study
there. Dr. Bing YU, an old friend and mentor of mine, helped me editing the Chinese
version of the abstract.
Last but not least, I would like to express my deep appreciation to my grandparents,
parents and other families and relatives. It would not have been possible for me to pursuit
my academic dream in these years without their supports and helps. They are the source
of my spirit and power. Any achievement I obtain also belongs to them.
x
Table of contents
Abstract (English)………………………………………………………………………..…..……iv
Abstract (Chinese)………………………………………………………………..………….…..vii
Acknowledgements……………………………………………………………..………………...ix
Table of Contents…………………………………………………….………………………...…xi
List of Tables and Figures………………………………………………………………….……xv
Glossary………………………………………………………………………………..……..….xvi
Abbreviation………………………………………………………………………….……..…..xviii
Chapter 1 Introduction………………………………………………………………….……….1
1.1 Background……………………………………………………………………………..…......1
1.1.1 High HIV prevalence and incidence among MSM in China…………………………….1
1.1.2 Social and cultural environment faced by HIV positive MSM…………………………..3
1.2 Sexual risk and secondary HIV transmission among HIV positive (and newly
diagnosed) MSM…………………………………………………………………………………..7
1.3 Psychological and mental health among HIV positive (and newly diagnosed) MSM…10
1.4 Health service utilization among HIV positive (and newly diagnosed) MSM………….13
1.5 Exploring complexities of secondary HIV transmission through qualitative studies….14
1.6 Theories, concepts and the research framework……………………………….………..15
1.6.1 Conceptualization of adaptation in medical anthropology………………….…………15
1.6.2 The social ecological model……………………………………………….……………..17
1.6.3 Cognitive adaptation and self-control………………………………………….………..19
1.6.4 Emotion and motivation are influential in health behaviour……………………….…..21
1.6.5 Action world and its role in health behaviour……………………………….…………..24
1.6.6 Social control/social order………………………………………………………………..26
1.6.7 Stigma……………………………………………………...………………………..……..27
1.6.8 Identity control………………………………………….……………………….…………29
1.6.9 Research framework……………………………………….…………………….……….32
1.7 Goals, objectives and research questions……………….……………………………….34
Chapter 2 Methodology………………………………………………………………………..38
2.1. Entrée into the field……………………………………………….……………………...…38
2.1.1 The start of the research………………………………………….………………………38
2.1.2 Pilot work…………………………………………………….…………………...…….….39
2.2 The participants…………………………………….………………………………………..43
2.3 Data collection……………………………………………………………………...…….….50
2.4 Data analysis…………………………………………………………………………...……58
xi
2.5 Rigour……………………………………………………….………………………………..62
2.6 Reflexivity………………………………………………….…………………………………68
2.7 Ethical considerations……………………………………………….…………………...…75
Chapter 3 Social circumstances and MSM communities in Shenzhen………….……78
3.1 Population and economic circumstances………………….…………………………...…78
3.2 Shifting political situation…………………………………………………….…………......80
3.3 A migrant society………………………………………………………………………....….87
3.4 Shenzhen Culture…………………………………………………………………………...93
3.5 MSM community and tongzhi subculture…………………………………………………98
3.6 The subgroup of HIV positive MSM……………………………………….……………...113
3.7 Public health implications……………………………………………………………….…117
Chapter 4 Health care system and services related to HIV case detection and follow
up……………………………………………………………………………………….………..118
4.1 Formal health care system………………………………………………………………..118
4.2 Health insurance………………………………………………………………….………..125
4.3 “Four Free and One Care” policy……………………………………………………...…126
4.4 Informal health care…………………………………………………………….………….127
4.5 Services related to HIV case detection and follow up……………………………….…131
Chapter 5 Psychological and mental health…………………………………….…...…..142
5.1 Negative mental health outcomes…………………………………….………………….142
5.1.1 Depressive symptoms…………………………………………………………….….....142
5.1.2 Anxiety symptoms………………………………………….………………….…..…..146
5.1.3 Factors associated with negative mental health outcome…………………………...150
5.1.3.1 Individual factors………………………………………………………………....……150
5.1.3.2 Interpersonal factors………………………………………………………….……….157
5.1.3.3 Cultural factors in community and family……………………………………………160
5.1.3.4 Institutional and structural factors…………………………………………………...163
5.2 Positive mental health outcomes………………………………………………………...166
5.2.1 Integrating negative experiences and recovery……………………………………...166
5.2.2 Resources for recovery…………………………………………………………………169
5.2.3 Back to normal functioning……………………………………………………………..170
5.2.4 Post-traumatic growth……………………………………………………………….…..172
5.2.5 Factors associated with positive mental health outcome………………….……..…175
5.2.5.1 Individual factors………………………………………………………………....……175
5.2.5.2 Interpersonal factor…………………………………………….……………...………181
xii
5.2.5.3 Community-related factors…………………………………….……………………..184
5.2.5.4 Institutional factors…………………………………………………………….……....187
5.3 Public health concern of suicidal ideation……………………………….………………190
5.4 Impacts of psychological and mental health……………………………….……………194
5.5 Summary of psychological and mental health in a modified socio-ecological mode..195
5.6 Discussion……………………………………………….………………………………….197
5.6.1 The emerging of a syndemic in HIV and some psycho-social and cultural
conditions.........................................................................................................................197
5.6.2 Powerful social and cultural factors associated with mental health…………….…..200
5.6.3 Resilience among newly diagnosed HIV positive MSM……………………………...208
5.6.4 Service implications………………………………………………..…………………….213
Chapter 6 Sexual risk…………………………………………….…………………………..221
6.1 Continued unprotected anal intercourse (UAI) after being diagnosed HIV positive...221
6.2 Changes in practising UAI during the study period…………………………..…………222
6.3 Factors associated with UAI with non-commercial sex partners…………..………….224
6.3.1 Individual factors………………..………………………………………………………..225
6.3.2 Interpersonal factors…………………………..…………………………………………229
6.3.3 Community-based factors………………………………..……………………………..231
6.3.4 Institutional factors………………………………………..……………………………..234
6.4 UAI with commercial sex partners…………………………………………………….....235
6.5 Comparing factors associated with UAI among commercial and non-commercial
partners............................................................................................................................238
6.6 Reduced risky behaviour after diagnosis……………………………….…………….….239
6.7 Factors associated with condom use………………………………………………….…241
6.7.1 Individual factors………………………………………………..……………………..…241
6.7.2 Interpersonal factors………….……………………………………………….………...246
6.7.3 Community factors……………………………………………………………….……...248
6.8 Other special issues related to risky sexual behaviour…………………………….….250
6.9 Summary of sexual risk in a modified socio-ecological model………….…………..261
6.10 Discussion…………………………………………………………………….…………..263
6.10.1 Prevalence of UAI…………………………………………………………….………..263
6.10.2 Partner types and UAI…………………………………………………………………265
6.10.2.1 Fear of losing partners in a context of non-serostatus disclosure………………266
6.10.2.2 Anonymous sexual encounters and moral judgment…………….……………….267
6.10.2.3 Economic barriers………………………………………………………..………….270
6.10.2.4 Intrapersonal contexts………………………………………………………..……..271
6.10.3 Critical views on some practices……………………………………………………...274
xiii
6.10.4 Emerging positive experiences from Shenzhen……………………………..……..276
6.10.5 Service implications……………………………………….…………………………...279
Chapter 7 Health service seeking…………………………………………..………………285
7.1 Problems identified in health service seeking……………………….……….………….285
7.2 Processes of adaptation ……………………………………………………….…….……289
7.3 Negative factors associated with health service seeking………………….…….…….296
7.3.1 Individual factors……………………………………………………………..…………..296
7.3.2 Interpersonal factors………………………………………………………..……………302
7.3.3 Community-based factors………………………………………………………….…...304
7.3.4 Health care institution-based factors……………………………….………….………309
7.4 Positive factors associated with health service seeking………………………………..319
7.4.1 Individual factors………………………………………………..………………………..319
7.4.2 Interpersonal factors……………………………………………………………..………321
7.4.3 Community-based factors………….…………………………………………………...325
7.4.4 Factors in the health care institutes—free services…………………………….……328
7.5 Summary of health service seeking in a modified socio-ecological model………..…329
7.6 Discussion…………………………………………..………..……………………………..331
7.6.1 Problems in health care institutes………………………………………………….…..331
7.6.1.1 The top-down approach – controlling instead of community building………..…..331
7.6.1.2 Problems among health care providers…………………………………………..…335
7.6.2 Tailored participatory approach to health care and education for HIV positive
MSM................................................................................................................................339
7.6.3 Necessity for developing MSM communities…………………….....………………..342
7.6.4 Service implications…………………………………………………….………….……349
Chapter 8 Discussion and implications………………………………………………..….355
8.1 The occurrences of UAI and its hidden meaning…………………………….….………355
8.2 Informing the future HIV epidemic among MSM in Shenzhen…………………….…..357
8.3 Difficulties of controlling the HIV epidemic among MSM ……….……………………..361
8.4 New HIV prevention approach………….………………………………………………...368
8.5 Critiquing theories for recommended changes……………………………….………...386
8.6 Limitations of the study………………………………………….……………………...…400
8.7 Conclusion……………………………………………….…………………………………405
Appendix I to IX …………….……………………………..…………………………………..409
Bibliography……………………………………………………………………………………425
xiv
List of Tables and Figures
Table
Table 1: Summary of the characteristics of respondents (HIV positive MSM)…….……....48
Figure
Figure 1 The framework flow chart…………………………...………………….....................33
Figure 2 The flow chart of formal health system in Shenzhen related to HIV positive
MSM................................................................................................................................124
xv
Glossary an chang (暗娼)
ang zang (肮脏)
prostitutes-in-secret
dirty
chao nan (潮男)
trendy man
cheng zhong cun (城中村)
village in town
Fang Bao Suo (防保所)
Prevention and Health Care Centers, a special grassroots
branch in the CDC system in Shenzhen
da gailv daodeguan (大概率道德观) large-probability-morality, affirming the majority of
events or behaviour and denying the minority
fu er dai (富二代)
the second generation of the richer
gan jing (干净)
clean
gao su zhi (高素质)
high quality, high caliber or high quality of desire
gao wei (高危)
high-risk
gao zhi (告知)
informing
gong yi (公益)
public welfare
guan xi (关系)
connection and relation
guan Wai (关外)
outside the special economic zone
guan nei (关内)
inside the special economic zone
hua xin (花心)
playful or promiscuous
hukou (户口)
permanent household registration
jiao cha gan ran (交叉感染)
cross-infection
lan (滥)
promiscuous
lao ke ren (老客人)
regular customers
lao xiang (老乡)
fellow townsman, a person from the same town as yourself
lian (脸)
face
liang zai (靓仔)
beautiful or good looking boys
lin zhong guan huai (临终关怀) terminal care
liumangzui (流氓罪)
hooliganism
luan (乱)
messy, chaotic or promiscuous
lei ren (雷人)
shocking as thunder
ma mi (妈咪)
mamasan/procurer
MB
money boy, male sex workers
mei su zhi (没素质)
low quality/ poor distinction
nantong (男同)
homosexual man
niang (娘的)
feminine
nong min fang (农民房)
farmers’ housing
qing kuang (情况)
personal physical conditions of age, height and weight
xvi
qin qing (亲情)
family love
que ren (确认)
recognized
que zhen (确诊)
diagnosed
qun pi (群劈)
performing group sex
ren qing (人情)
favour
shuai ge (帅哥)
handsome men
tongxinglian (同性恋)
homosexual
tongzhi (同志)
comrade, gay or queer
tong lei (同类)
births of a feather/congener
wang ming (网名)
feign name used on Internet
wang you (网友)
Internet friend
wenming (文明)
civilization
xianjin (先进)
advancement
xian shi (现实)
realistic
yan da (严打)
the abbreviation of ‘hard strike against serious crime, such as
anti-pornography and prostitute campaign’
you (油)
lubricant
you xiu (优秀)
excellent, high quality
you ai xin (有爱心)
affectionate
yuan (缘)
predestined relationship
zhao xiaojie (找小姐)
go whoring/ looking for female sex workers
zhi ben (资本)
advantages or superiorities
e.g. being well-educated, having
a good income and being handsome
zhi qing (知青)
educated youth, a specific term used in the Mao’s era, here
meaning lack of style
zhi xing fen li (知行分离)
a disparity between behavior and knowledge
419
one night stand
69
mutual oral sex
1
performing penetration in anal sex
0
performing being penetrated in anal sex
3p
three men performing group sex
90 hou (90 后)
those man born after 1990
xvii
Abbreviations HIV
Human Immune-deficiency Virus
AIDS
Acquired Immune Deficiency Syndrome
STD
Sexually Transmitted Disease
ART
Anti-retroviral Treatment
HAART
Highly Active Antiretroviral Therapy
CDC
CCTV
CW
Centre for Disease Control and Prevention
China Central Television
A village in town
MSM
Men Who Have Sex with Men
MB
money boy
UAI
Unprotected Anal Intercourse
PLWH
People Living with HIV and AIDS
VCT
Volunteer Counselling and Testing
HMB
Health Belief Model
SCT
Social Cognitive Theory
TRA
Theory of Reasoned Action
TPB
Theory of Planned Behavior
WHO
World Health Organization
UNAIDS
Joint United Nations Programme on HIV/AIDS
USCDC
United State Centre for Disease Control and Prevention
USNIH
United State National Institute of Health
NGO
Non Governmental Organization
CBO
Community-based Organization
FCH
Fenway Community Health
TCM
Traditional Chinese Medicine
SPHPC
School of Public Health and Primary Care
CUHK
The Chinese University of Hong Kong
CH Foundation
A Hong Kong-based NGO
XY
A Hong Kong-based NGO
SA
A Grassroots HIV Positive Group
SRW
A Grassroots Tongzhi Volunteer Group
HPG
A Grassroots HIV positive Group
BR Tour
A Tongzhi Tour Company
www.szjy.cc
A Tongzhi Website
XHM
A HIV Positive QQ Group
Qin You Hui
A Grassroots Tongzhi Support Group
YGL
A Volunteer Association
xviii
Chapter 1 Introduction
1.1 Background
According to the Global report: UNAIDS report on the global AIDS epidemic 2010,
the overall growth of the global AIDS epidemic appears to have stabilized. In 2009, there
were an estimated 2.6 million [2.3 million-2.8 million] people who became newly infected
with HIV, and this was nearly one fifth (19%) fewer than the 3.1 million [2.9 million-3.4
million] people newly infected in 1999, and globally, adult HIV prevalence (10-49 years)
was 0.8% [0.7%-0.8%] in 2009. In Asia, people newly infected with HIV decreased from
450,000 [410,000-500,000] in 2001 to 360,000 [300,000-430,000] in 2009. However, the
HIV prevalence among MSM is rising (Ruan et al., 2009; Guo et al., 2009; Ma et al., 2007).
In China, the dominant route of HIV transmission has changed from injection drug use
(IDU) to sexual transmission, which covered 56.9% of new HIV infections in 2007 (Wang et
al., 2009). New emerging HIV/AIDS challenges in China are transitions from previously
blood-driven HIV epidemics to now sex-driven HIV epidemics (Wu & Wang, 2010; China
Ministry of Health, UNAIDS, & WHO, 2011).
1.1.1 High HIV prevalence and incidence among MSM in China
In
China,
approximately
760,000
people
are
currently
living
with
HIV
(UNAIDS/WHO, 2009). The percentages of newly reported HIV cases attribute to male
homosexual exposure were 0.2% in 2001 (China Ministry of Health & UN Theme Group on
HIV/AIDS in China, 2003), 7.3% in 2005 (China Ministry of Health, UNAIDS & WHO, 2006),
12.2% in 2007 (China Ministry of Health & UN Theme Group on HIV/AIDS in China, 2007),
and 32.5% in 2009 (China Ministry of Health, UNAIDS & WHO, 2010).
1
A national survey was conducted in 61 Chinese cities in 2008, covering 18,000
MSM and reported an HIV prevalence of 4.9% (Wu, 2009), and a meta-analysis estimated
the national HIV prevalence among Chinese MSM to reach 5.3% (95% CI: 4.8%-5.8%) in
2007-2009 (Chow, Wilson, Zhang, Jing & Zhang, 2011).The HIV prevalence among MSM
increased rapidly in different parts of China - from 0.6% in 2003 to 10.6% in 2007 in
Chengdu (Wu, 2009) and from 10.4% in 2006 to 12.5% in 2007 in Chongqing (Feng et al.,
2009). In Guangdong province, a respondent-driven sampling survey in Guangzhou
showed that the adjusted HIV prevalence among MSM was 5.2% (Zhong et al., 2011),
while a time-location sampling survey in Shenzhen showed that HIV prevalence among
male sex workers was 5.3% (Cai et al., 2010). Surveys in Shandong province showed that
2.5% MSM were HIV infected, and 39.5% acknowledged having sex with both men and
women, while 60.5% had sex with men only (Liao et al., 2011).
The HIV incidence rate among MSM was 2.6 per 100 person-years in Beijing and
5.4 per 100 person-years in Shenyang, and syphilis infection, no perceived risk of HIV
infection and having more than 5 male sexual partners within the past 12 months were
independently associated with HIV seroconversion (Li et al., 2010; Xu et al., 2010). In
addition, our research team conducted a 6-month prospective cohort study among MSM in
Nanjing in 2007 and detected a high HIV incidence (5.12 per 100 person-years) (Yang et
al., 2010). The total urban adult male population in China was around 216 million (China
National Bureau of Statistics, 2008). Assuming the prevalence of active MSM in urban
China is similar to that of Hong Kong or other Western countries (about 2% of the male
general population) (Lau et al., 2004), the observed HIV incidence implies a total of
216,000 new HIV cases per year in urban China.
2
1.1.2 Social and cultural environment faced by HIV positive MSM
In contemporary Chinese society, certain dominant discourses against MSM still
remain, such as epistemological dualism, heterosexual hegemony and lack of political
sensitivity towards sexual minorities (Li, Holroyd & Lau, 2010). Chinese social patterns
have been those of affirming the majority of events or behaviour and denying the minority
(Li, 2006). Heterosexual marriage is regarded as a cultural imperative because it
legitimates procreation and maintains the historical bloodline of the family. Fei (1992)
underscored that to become a true adult is to be connected to others and to take up one’s
obligations, in particular familial obligations, and failure to do so is considered being less
than human. Public health discourses on HIV prevention and intervention have dominated
Chinese sociocultural concerns and portrayed MSM as a “high-risk” population.
Homosexuality in China has long been regarded as sick, abnormal or perverted,
interwoven by traditional values of family, marriage, gender roles, and contemporary
ideology of reformation and neo-liberalism (Micollier, 2006; Rofel, 2007). When HIV
prevalence among the MSM population is increasing sharply, the negative moral judgment
and attitudes against MSM are reinforced, and HIV positive MSM are therefore burdened
by layered stress and stigma.
A meta-analysis of people living with HIV (PLWH) in the Western literature showed
that a high stigma level was consistently and significantly associated with low social
support, poor physical health, poor mental health, age and income (Logie & Gadalla, 2009).
The complexity of HIV-related stigma stems from the interaction with cross-cultural
differences, structural inequalities, discrimination by health care professionals and social
process (Campbell & Deacon, 2006; Parker & Aggleton, 2003; Van Brakel, 2006). And
HIV-related stigma is also described in different forms, such as perceived stigma (Berger,
3
Ferrans & Lashley, 2001), internalized stigma (Mak, Poon, Pun & Cheung, 2007), enacted
stigma (Nyblade, 2006), symbolic stigma (Deacon, 2006), and instrumental stigma (Herek,
Widaman & Capitanio, 2005). Stigma and discrimination may be layered by particular
features of HIV/AIDS and other non-HIV components (Reidpath & Chan, 2005). The route
that one contracts HIV decides the degree of acceptance or discrimination toward a
particular PLWH (Schellenberg, Keil & Bern, 1995; Lau & Tsui, 2005).
Traditional Chinese culture, which emphasizes lineage continuity and family
obligations, does not accept homosexual behaviour and stigmatization toward PLWH in
China has been widely documented (Lau & Tsui, 2005; Li et al., 2007). The stigma and
discrimination against MSM in China are based on four cultural factors: social status and
relationships, the value of family, perceptions of immorality and abnormality, and gender
stereotypes of masculinity (Liu & Choi, 2006). HIV positive MSM face dual sources of
stigmatization (Lau, Choi, Tsui & Su, 2007). HIV/AIDS-related stigma overlap and are
layered with a number of co-stigmas associated with the modes of disease transmission
(Chan, Yang, Zhang & Reidpath, 2007). A study in Hong Kong showed that stigmatization
toward different vulnerable groups was consistently associated with discriminatory
attitudes and stigmatization toward PLWH and HIV-related stigma was therefore layered
(Lau, Choi, Tsui & Su, 2007).
Studies show that stigma of homosexuality contributes to negative self-image, low
self-esteem, heavy use of alcohol and drugs, and poor mental, psychological and
emotional health (Choi, Hudes & Steward, 2008; Liu & Choi, 2006; Wong & Kong, 2007;
Logie & Gadalla, 2009). Although stigma is considered a major barrier to effective
response to the HIV/AIDS epidemic, stigma reduction efforts are relegated to the bottom of
AIDS programme priorities. The association between HIV-related stigma and physical
4
health has potential implications for treatment, care and support for people at different
stages of HIV infection.
In the current study, all the HIV positive MSM were migrants. Migrant populations
have been shown to have a greater risk of poor health in general and HIV infection in
particular. This is due to the impact of sociocultural patterns of the migrant situation on
health, their economic transitions, reduced availability and accessibility of health services,
and the otherness of migrants often creates xenophobia, isolation and hostility by the host
community (UNAIDS, 2000). In the case of migrant MSM, HIV risk is related to their
personal experiences of homophobia (operationalized as verbal and physical harassment
during childhood for being homosexual), racism (i.e. rude treatment, police harassment
linked to race/ethnicity), and poverty (i.e. running out of money for basic necessities,
having to borrow money, having to look for work); and more specifically, men with high
levels of HIV risk (i.e. reporting unprotected sex with a recent non-monogamous partner)
reported more of these oppressive experiences as compared with their counterparts with
lower risk (Diaz & Ayala, 2000).
Studies in China support the fact that migration is an important factor leading to the
spread of HIV (Li et al., 2004; Smith & Yang, 2005; Yang, 2005). Temporary migrants in
China are predominantly single males in their late teens through early 30s, and they are
generally more prone to risk-taking (Fan, 2003; Liang & Ma, 2004; Wang et al., 2002). A
study showed that 12% of migrants had multiple sexual partners and only 9% of them
reported often or always using condoms, and only 15% perceived themselves to be at risk
of HIV infection (Hu, Liu, Li, Stanton & Chen, 2006). The separation from family and home
community may create a social control vacuum whereby migrants feel less constrained by
social norms (Yang, 2001), and this is the most significant mediating factor that explains
5
migrants’ heightened HIV risk behaviour (Yang, Derlega & Luo, 2007). Moreover, many
migrants are socially and residentially isolated from mainstream society in cities and most
live with fellow migrants at places of work or concentrate in city fringe areas characterized
by poverty, social disintegration and lack of law enforcement and social/health services
(Ma & Xiang, 1998; Zhang, 2001). A qualitative study in Beijing showed that some migrants
demonstrated hostility, social isolation and poor social adjustment (Li, Stanton, Fang & Lin,
2006).
The HIV/AIDS epidemic has a history of three decades, but structural issues still
play a significant role in HIV transmission. In spite of the advances in treatment and care
available in most developed countries, the HIV/AIDS pandemic continues to spread
throughout developing countries, structural inequalities (e.g. poverty, racism, gender
inequality and sexual oppression) continue to fuel the epidemic in all societies, and HIV
infection has increasingly been concentrated in the poorest, most marginalized sectors of
society in all countries (Parker, 2002). In China, with the expansion of voluntary HIV
counselling and testing (VCT) services, more HIV positive MSM cases are being detected
(Wu, Sullivan, Wang, Rotheram-Borus & Detels, 2007). Considerable difficulties, however,
arise in following up these confirmed cases. It has been reported that many Chinese MSM
are migrants (He, Wong, Huang, Thompson, & Fu, 2007). Free antiretroviral treatments
(ART) are not always available to PLWH who are not registered local residents (China
Ministry of Health, UNAIDS & WHO, 2006). Services that are MSM-friendly are even less
available (Choi, Lui, Guo, Han, & Mandel, 2006). A lack of properly trained counsellors is
another issue (de Lind van Wijngaarden, Brown, Girault, Sarkar, & van Griensven, 2009).
Though some non-government organizations (NGOs) are working on HIV prevention
targeting MSM, these NGOs are only at the preliminary stage of development (Wu et al.,
2007). Perceived social support from family (r=0.28, p<0.01), friends (r=0.36, p<0.001)
6
and significant others (r=0.28, p<0.01) are positively associated with quality of life (Xie &
Mari, 2011). But lack of comprehensive HIV-related supportive services for PLWH hinders
the provision of effective HIV prevention targeting HIV positive MSM (Wu et al., 2007).
1.2 Sexual risk and secondary HIV transmission among HIV positive (and newly
diagnosed) MSM
From international literature, a high prevalence of UAI among HIV positive MSM
has been reported. Some studies reported higher prevalence of UAI among HIV positive
MSM than among HIV negative MSM: in London, 18% of respondents reported UAI with
casual sex partners; in Holland, 24.7% of the respondents with steady partners and 34.2%
of the respondents with casual sex partners had UAI during the past 6 months; in Canada,
34% of the respondents had engaged in UAI in the past 6 months (van Kesteren, Hospers
& Kok, 2007 for a review). In the United States, the prevalence of UAI with HIV
seropositive partners is 30% and 26% with HIV seronegative or serostatus unknown
partners (Crepaz et al., 2009). A study in Lima presents that among HIV positive MSM who
reported at least one male sex partner during the past 6 months, 33.6% (95% CI 25.3 to
54.3%) had insertive UAI and 44.6% (95% CI 35.2 to 54.3%) had receptive UAI with a
male partner uninfected with HIV at least once (Clar et al., 2008).
Predictors of transmission risk with casual partners in the US included stimulant
(e.g. crystal methamphetamine) and other drug use, having low coping self-efficacy, and
not having disclosed one’s HIV serostatus to all partners were associated with risk in
primary relationships (Morin et al., 2005). Those MSM who did place others at risk soon
after receiving their HIV-positive results were more likely to continue to engage in this
behaviour up to 9 months post-seroconversion (Colfax et al., 2002). Past behavior
7
(OR=9.75; 95% CI: 4.48-21.26), intention (OR=3.13; 95% CI: 1.25-7.81), self-efficacy
(OR=3.62; 95% CI: 1.40-9.37) and use of sex drugs (OR=0.16; 95% CI: 0.06-0.45)
contributed to the prediction of 100% condom use among HIV positive MSM (Schutz et al.,
2011).
The use of highly active antiretroviral therapy (HAART) has been reported to be
associated with secondary HIV transmission. A study testified to the fact that the potential
reduction in secondary transmission associated with ART was offset by the longer duration
of infectiousness and over the entire course of infection, treatment with ART led to a 23%
increase in secondary infections, and therefore argued that ART must be accompanied by
effective HIV-related risk reduction interventions (McCormick et al., 2007). Other studies
also showed that any decrease in per contact risk of HIV transmission due to HAART use
appears to have been counterbalanced or overwhelmed by increases in the number of
unsafe sexual episodes and the epidemiological benefits of HAART, and earlier diagnosis
on incidence have been entirely offset by the increase in the risk behaviour rate (Katz et al.,
2002; Bezemer et al., 2008).
In China, however, there is a dearth of data on secondary HIV transmissions (both
to male and female sex partners) among HIV positive MSM, and no study has looked at
newly diagnosed HIV positive MSM. This gap implicates that more complex and in-depth
investigations are needed to explore the Chinese cultural context among newly diagnosed
HIV positive MSM as to how occurrences of UAI interact with social and cultural factors or
conditions, such as partner types, difficulty in looking for lovers/stable partners,
anonymous sexual encounters, moral judgment, economic difficulties, social support,
self-care, self-protection, and intrapersonal conditions (e.g. negative emotions, mental
health, misconception and risk interpretation).
8
Quantitative studies dominate the studies of sexual risk among HIV positive MSM,
and only few studies have adopted qualitative methods. A qualitative study among HIV
positive African American and Latino MSM showed that addressing socio-cultural and
gender conflicts should be prioritized as being basic to behaviour change and
socio-cultural, religious, and alternative resources should be used to minimize social
isolation and rejection against HIV seropositive MSM (Williams, Wyatt, Resell, Peterson &
Asuan-O’Brien, 2004). A qualitative study in the US exhibited support for a link between
crystal meth use and high–risk sexual behaviour among HIV positive MSM and pointed out
the need for associated mental health, functional and quality-of-life impairments that seem
to accompany continued crystal use in individuals with HIV (Mimiaga et al., 2008). In India,
a qualitative study among HIV positive MSM showed that formidable challenges to HIV
prevention include misconceptions about HIV transmission, cultural taboos around
discussing sexual behaviour and HIV, stigma related to same-sex behaviour, harassment,
and the criminalization of consensual sex between men (Chakrapani, Newman &
Shunmugam, 2008). Another qualitative study in the Netherlands illustrated that although
some men might have a clear notion of personal responsibility for safer sex, contextual
factors (e.g. partner type, perception of the behaviour of others, partner characteristics,
and comparable factors and negotiating personal responsibility) can influence whether
behaviour is consistent with their norms of personal responsibility (van Kesteren, Hospers,
Kok & van Empelen, 2005). But in China, little qualitative research has been conducted to
explore HIV positive MSM, and there has been no qualitative study to date about newly
diagnosed HIV positive MSM.
9
1.3 Psychological and mental health among HIV positive (and newly diagnosed)
MSM
Higher psychological and mental health problems among sexual minorities (e.g. gay,
lesbian and bisexual) have been reported in the international literature. In the UK,
compared with heterosexual men, gay men suffer greater levels of psychological distress,
and are more likely to have consulted a mental health professional in the past, deliberately
harm themselves and use recreational drugs (King et al., 2003). In the US, LGB youths
experience significant victimization, such as being verbally abused (75%) and physical
attacks (15%); and youths who had experienced more victimization and who had lost
friends reported more mental health symptoms (D’Augelli, 2002). Men who have high
levels of minority stress are twice or three times as likely to suffer from high levels of
distress, and LGBs have a higher prevalence of mental disorders than heterosexuals,
because, caused by stigma, prejudice, and discrimination, gay people in a heterosexist
society are subjected to chronic stress, and a hostile and stressful social environment
(Meyer, 1995; Meyer, 2003). In China, a study among MSM showed that 45.5% of
respondents suffered from anxiety, and 57.5% had depression (Zheng, Wang, Xu, Zhao &
Zhang, 2004). Another study among homosexual men and women showed that 33% had
attempted suicide in the past (Liu et al., 1999).
The adverse psychological consequences of HIV have been known since the start
of the epidemic. Psychological problems common to PLWH include affective disorders,
adjustment reactions, substance abuse, organic brain disorders, and premorbid
personality disorders such as antisocial, borderline, and histrionic (Kalichman & Sikkema,
1994). Moreover, studies find that individuals living with HIV often have complicated
histories of negative life experiences, and a list of psychosocial factors related to HIV/AIDS
10
have been identified, such as traumatic events; mental illness including depression,
anxiety, and posttraumatic stress disorder; lack of trust in the health care system and
government; and experiences of stigma among individuals with HIV disease (Whetten,
Reif, Whetten & Murphy-McMillan, 2008). HIV positive MSM construct their internal
representation and schema, which are used for interpreting and planning their behaviour
(Weinman & Petrie, 1997). This process facilitates them to make sense of their experience
and to provide a basis for their own coping responses (Weinman, Petrie, Morris, & Horne,
1996). The adaptation process further interacts with the larger social and cultural
environment (e.g. stigmatization, migration experience, availability and quality of
treatments and care services, relationship with HIV workers, norms and subculture in MSM
communities) to affect their sexual relationship and risk behaviour with men and women
(e.g. number of partners, condom use, type of partners, way of recruiting sex partners and
bisexual behaviour).
In China, a number of studies have investigated psychological and mental health
issues among PLWH. A study showed that compared with the non-PLWH, PLWH reported
a higher prevalence of symptoms of depression, anxiety and stress; and absence of
HAART, poor physical function, perceived discrimination from relatives and friends, and
low level of resilience were associated with depression, anxiety and stress (Yu et al., 2009).
A study showed that 8% of the sampled PLWH self-reported having suicidal ideation and
had attempted suicide in the last year; and physical function, depression, and spouse’s
depression were independently associated with the index PLWH’s suicidal ideation (Lau et
al., 2010). Risk factors for mental health problems among Chinese PLWH have been
identified, such as low self-acceptance and poor social support (Chen et al., 2004; Zhang,
Xu, Zhang, Wang & Zhang, 2007), stress related to HIV/AIDS (Wang, Lin, Wu & Qu, 2005),
negative life events (Chen et al., 2004), and perceived discrimination (Fang, Jiang & Dong,
11
2007).
The mental health status of HIV positive MSM in China, however, has been largely
understudied. There has to date been only one reported study of help-seeking behaviour
among PLWH in China with a sample of 21 respondents presented that upon receiving
diagnosis participants commonly go through a wide range of negative psychological
experiences, such as feelings of disbelief, shock, anger, panic, fear, pessimism,
depression and suicidal thinking (Zhou, 2009). However sexual orientation and sexual
minority stress, which have been argued to be significantly related to mental health among
MSM population (Institute of Medicine 2011), were absent in this study.
Through the above review, there have been very few studies investigating
psychological and mental health issues among HIV positive MSM, and no study has
targeted newly diagnosed HIV positive MSM. We need to understand how newly
diagnosed HIV positive MSM’s personal experiences lead them to acquire a new personal
or collective identity of being HIV positive tongzhi/MSM. It is imperative to trace how these
men represent their illness, such as their personal values and plans, coping, changes in
social relationship, perception toward HIV, partner and family relationships, disclosure,
work and finance. It is also imperative to examine co-morbidities of mental health and
psychosocial and cultural factors or conditions, such as social adversities, suffering
experiences, cultural trauma, stigma and discrimination, and resilience in a Chinese
cultural context. It is warranted to understand how these processes affect the practice of
risk behaviour among newly diagnosed MSM in China.
12
1.4 Health service utilization among HIV positive (and newly diagnosed) MSM
An extensive literature review of Western studies showed that there are unique
health disparities that exist for MSM related to social, emotional, and mental health factors,
in addition to physical issues such as STDs, and call for multidimensional and culturally
competent care and health counselling (Gee, 2006). Some studies have assessed the
effects of sociodemographic factors on health service use among PLWH (Mor, Fleishman,
Dresser & Piette, 1992; Crook, Browne, Roberts & Gafni, 2005); other studies provide
information on barriers to access, disparities in treatments and factors contributing to
wasteful use of services (Uphold & Mkanta, 2005); and some studies have paid attention
to unmet needs for sexual and reproductive health services for PLWH (Brickleya et al.,
2011).
In China, a study investigated health care workers’ perceived institutional support
for HIV/AIDS care and found that regional workers (at the provincial, city and county levels)
reported higher institutional support than local workers (at the township and village levels)
and asked for addressing of the unbalanced health care system in China (Li, Liang, Wu,
Lin & Wu, 2008). Another study showed that costs of outpatient care and inpatient care
were RMB16,248 for asymptomatic HIV infections and RMB36,795 for AIDS patients, and
demands for health services and costs of medical care were high among patients with
HIV/AIDS (Yang, Li, Wu, Xu & Wang, 2003). And most PLWH desired group intervention
as a means for providing psychological support (Yu et al., 2009). Limited studies however
have been conducted to investigate health service seeking among HIV positive MSM. Only
one study showed that the use rate of HIV-related health services was quite low among
HIV positive MSM in Chengdu, 30% never receiving condoms, lubricant and peer
education, 35.2% not visiting formal medical institutes for treatments after having STD
13
symptoms, 11.4% never taking a CD4 test, 41.4% never disclosing their seropositive
status to others, and 76.9% never referring their sex partners to have an HIV test (Mi et al.,
2010). However there has been no research to date that has employed an insiders’ view
from newly diagnosed HIV positive MSM. What kinds of health services (especially free
health services) are available to them? Do they use these services? How do they view and
experience health service seeking? What are their unmet needs? What are the positive
and negative factors associated with their health service seeking? These questions ask for
in-depth investigations from the perspective of HIV positive MSM.
1.5 Exploring complexities of secondary HIV transmission through qualitative
studies
The reasons behind UAI among HIV positive MSM are extremely complex. The
reasons may be related to issues such as attributions about one’s HIV infection (Bingman,
Marks & Crepaz, 2001), non-disclosure to male or female sex partners (Harawa, Williams,
Ramamurthi, & Bingham, 2006), substance use (Parsons, Kutnick, Halkitis, Punzalan &
Carbonari, 2005; Drumright et al., 2006), changes in risk perceptions (Harawa, Williams,
Ramamurthi, & Bingham, 2006), change in partner relationship (Poppen, Reisen, Zea,
Bianchi & Echeverry, 2005; Simon Rosser et al., 2008), and stressful life events
(Calzavara et al., 2011). It is warranted to understand amongst HIV positive MSM the
determinants of no condom use when having sex, especially the occurrences of UAI. It is
useful to describe the differences between culturally idealized and actually occurring
sexual behaviour among newly diagnosed HIV positive MSM and within the same person
across time (Gagnon, 1989). Moreover, it is equally important to explore why newly
diagnosed HIV positive MSM practise safe sex consistently. However, no qualitative study
has been conducted to explore these issues in China yet. The complex relationships and
14
interaction processes cannot be easily captured by quantitative studies, so qualitative
studies are therefore warranted.
1.6 Theories, concepts and the research framework
1.6.1 Conceptualization of adaptation in medical anthropology
Adaptation is a core concept in medical ecological theory, which is defined as
behavioural or biological changes at either the individual or group level that support
survival in a given environment. The central premise of the medical ecological orientation
is that a social group’s level of health reflects the nature and quality of the relationships
“within group, with neighboring groups, and with the plants and animals (as well as
non-biotic features) of the habitat” (McElroy & Townsend, 1996:12 as cited in Baer, Singer
& Susser, 2003:32). In the current study, the rapidly increasing HIV epidemic among MSM
population implicates MSM as a specific socio-contextual subgroup in contemporary
Chinese society as encountering some serious problems or imbalance power relationships
in their social lives, which hasten the rapid spread of the virus.
Later on, interpretive medical anthropologists argued that disease is not only a
natural object, which cannot be separated from human consciousness, and humans can
experience the external material world only through their cultural frames (meaning-centred
approach). “Disease is not an entity but an explanatory model. Disease belongs to culture,
in particular to the specialized culture of medicine. And culture is not only a means of
representing disease, but is essential to its very constitution as a human reality” (Good,
1994:53). For example, AIDS is a disease rich with cultural conceptions, values and strong
emotions. Specifically in the current research, it was necessary to investigate a set of
interpretive activities of newly diagnosed HIV positive MSM, involving interaction of
15
biomedicine (e.g. CD4 count and virus load), social practices (e.g. counselling, disclosure,
seeking help), culturally constituted frames of meaning (e.g. negotiating new meanings of
being HIV positive), results in the construction of clinical realities (e.g. constrains due to
HIV), and interpretation of their relationships with other HIV positive people, HIV negative
MSM, and health care providers and other stakeholders.
Moreover, critical medical anthropologists push the theories a step forward, and
they focus on understanding the specific structure of social relationships that give rise to
and empower particular cultural constructions, such as the hierarchical social
structures—the changing political economy of human society (Singer, 1996:497). Whose
social realities and interests (e.g. which sexual orientation group, gay, straight, bisexual or
queer) do particular cultural conceptions express, and under what set of historic conditions
(e.g. economic development as the most important task) do they arise? The dominant
ideological and social patterns in medical care are intimately related to hegemonic
ideologies and patterns outside biomedicine. In such an analysis power differences shape
social process. The asymmetrical power relations construct the clinical reality and the
social utility of such construction maintains social dominance. Heterosexual hegemony is a
powerful force that dominates contemporary Chinese society and stigmatizes sexual
minorities, such as homosexuals. Rural-urban dualism is a deeply embedded social
structure in contemporary China, which greatly influences the distribution of social and
economic resources and powers.
Furthermore in a patriarchal social system like China, traditional forces, such as
reproduction, face, taboo and filial piety still exercise great power discursively. An
important way of presenting these forces is through a framework or lens of moral judgment.
Therefore, in the current study of newly diagnosed HIV positive MSM, we need to
16
investigate the power relationships
presented in those men’s narratives and
interpretations.
In the above conceptualization of adaptation in medical anthropology, human
consciousness, cultural frames, social relationships and power relations have been
highlighted as key factors that are associated with people’s adaptation process. In this
regard, it is necessary to investigate these issues among newly diagnosed HIV positive
MSM, so that a process of adaptation can be fully understood within the complexity of a
social and cultural context.
1.6.2 The social ecological model
Reviews of journal articles have revealed the most often used theories and trends in
theory use, such as the health belief model (HBM), social cognitive theory (SCT), the
theory of reasoned action/the theory of planned behaviour (TRA/TPB), and the
transtheoretical model/stages of change (TTM) (Glanz & Bishop, 2010). However, these
theories and models do not emphasize locating health behaviour into a comprehensive
social cultural context. A closely relevant model—social ecological model (McLeroy,
Bibeau, Steckler & Glanz, 1988)—has been developed to look at both individual and social
environmental factors influencing behaviour as an outcome of interest. In this model,
behaviour is viewed as being determined by five levels of factors.
(1) Intrapersonal factors—characteristics of the individual such as knowledge,
attitudes, self-concept, behaviour, skills, etc. In this level, human consciousness is
emphasized. This includes the developmental history of the individual, and therefore
highlights the importance of exploring people’s life history.
17
(2) Interpersonal processes and primary groups—formal and informal social
network and social support systems, including the family, work group, and friendship
network. On this level, significant others and interpersonal relationships, which are
important sources of social support, inform the internal dynamic of the model.
(3) Institutional factors—social institutions with organizational characteristics, and
formal (and informal) rules and regulations for operation. On this level, the focuses are
organizational culture supportive of behaviour changes, organizational changes for health
promotion and organizational influences on programme diffusion.
(4) Community factors—relationships among organizations, institutions and
informal networks within defined boundaries. On this level, the emphasis is the variations
in values, norms, attitudes, and behaviour, which are linked to specific networks, and
subcultures.
(5) Public policy—local, state, and national laws, policies, and procedures. On this
level, the focus is to strengthen the ability of mediating structures to influence policy,
thereby strengthening the mediating structures and their ability to meet the needs of their
members.
More importantly, reciprocal causation between the individual/behaviour and the
environment are highlighted (McLeroy, Bibeau, Steckler & Glanz, 1988). In other words,
behaviour is affected by, and affects the social environment. This is in line with an
important argument in medical anthropology that “culture is not only a means of
representing disease, but is essential to its very constitution as a human reality”. In this
regard, a door for health promotion is opened through setting up a virtual circle of initiating
healthy behaviour and establishing a healthy social cultural environment. Panter-Brick,
Clarke, Lomas, Pinder and Lindsay (2006) went a step further and argued that perceived
18
health impact in turn reinforces behaviour change and therefore reaches sustainability of
prevention and intervention. Behaviour change is expected to be maximized when
environments and policies support healthy choices, when social norms and social support
for healthy choices are strong, and when individuals are motivated and educated to make
those choices (Sallis, Owen & Fisher, 2008).
Individual and environment are therefore two key themes in human adaptation and
behaviour change. Individual aspects, such as human consciousness, can be described
more clearly and more in-depth by theories of cognitive adaptation and self-control.
1.6.3 Cognitive adaptation and self-control
Through the above discussion, human consciousness is one of the important points.
Consciousness refers to a variety of aspects of the relationship between the mind and the
world with which it interacts (van Gulick, 2004). It has been defined as: subjectivity;
awareness; the ability to experience feelings; wakefulness; having a sense of selfhood; or
the executive control system of the mind (Farthing, 1992), and the having of perceptions,
thoughts and feelings (Sutherland, 1989).
One of the most impressive qualities of the human psyche is its ability to withstand
severe personal tragedy successfully, and the majority of people facing such blows
achieve a quality of life or level of happiness equivalent to or even exceeding their prior
level of satisfaction (Leon, Butcher, Kleinman, Goldberg & Almagor, 1981 as cited in
Taylor, 1983). Based on cognitive adaptation theory, the adjustment process centres
around three themes: a search for meaning in the experience, such as to understand why
HIV infection happened and what impact it has had (e.g. knowledge, attitudes and
self-concept); an attempt to regain mastery over the event in particular and over one’s life
more generally, such as how can I keep infection of HIV or STDs from happening again,
19
and what can I do to manage it now (e.g. behaviour and skills); and an effort to restore
self-esteem
through
self-enhancing
evaluations
(e.g.
social
identity
and
self-affirmation)—many intrapsychic efforts at recovery involving finding ways to feel good
about oneself again (Taylor, 1983). In this regard, the ultimate result of a successful
adaptation to a diagnosis of HIV positive is to rebuild one’s self-esteem, for self-love and
self-release, which generally results from a process of reflexivity about one’s previous life
experiences.
Self-control is a concept used to explain differences among people in the frequency
of engaging in a wide variety of acts that cause harm to others (Gottfredson & Hirschi,
1990). It assumes that people are rational actors, seeking pleasure, and avoid pain and
balancing personal needs and desires with others’ needs and desires. Self-control theory
sometimes focuses on why people do not engage in crime and delinquency rather than
why they do (Hirschi, 1969). In relation to the issue of HIV positive MSM, it is important to
explore what is regarded as pleasure, benefit, need and desire among those HIV positive
MSM with different interpretations. These differences are embedded in individual specific
circumstances. In this context it is necessary to investigate why some MSM do not engage
in unsafe sex as well as why they engage in safer sex. For some HIV positive MSM, what
is needed may be just to escape the feeling of stress through sexual intercourse, and they
regard this moment as pleasurable and beneficial. For some HIV positive MSM, what is
needed may be to reaffirm themselves as a “good” person. The behaviour of unsafe sex is
regarded as “bad” and devastating to their self-esteem and it is therefore prohibited
consciously.
Self-control theory assumes that differences among people in self-control are also
associated with the distribution of people in settings that vary in the opportunities for crime
20
and delinquency, such as the unsupervised settings and absence of capable guardians
(Gottfredson & Hirschi, 2003; Hay & Forrest, 2008). Therefore, the settings and
opportunities where unsafe sex occurs among HIV positive MSM is also an important issue
for investigation. An ethnographic study in Guangzhou described that saunas were used
by men to facilitate time-out from the epidemic, providing a refuge from HIV/AIDS and
homosexuality-related stigma and enabling them to pursue casual sex or multiple partners
without fear or inhibition (Li, Lau, Holroyd & Yi, 2010). Tongzhi saunas are the important
setting where sexual behaviour takes place without surveillance (from self and others).
Saunas are places for MSM to escape internal and external surveillance, and a space to
present tongzhi subculture intensively.
When discussing the association between cognition and adaptation behaviour, the
related concepts of emotion and motivation should not be ignored. This is a new focus and
modification of the aforementioned social ecological model.
1.6.4 Emotion and motivation are influential in health behaviour
It has been argued that complex cognitive-emotional behaviour has its basis in
dynamic coalitions of networks of neural pathways, none of which should be
conceptualized as specifically affective or cognitive. Emotion and cognition are partly
separable, and often true integration of emotion and cognition takes place, strongly
blurring the distinction between the two (Pessoa, 2008). D’Andrade (1995) argued that
emotions are a special kind of informational system which is complementary to the
cognitive system and which evolves along with it. The cognitive system is specialized to
give an account of the external world, while the emotional and physical sensation systems
give an account of how things are going for the self – the physical sensation system tells
21
about how the body is doing, while the emotion system tells how well one is doing in
relation to the world. Emotions and cognitions together form a highly adaptive
representation system. However, a further issue appears where this representation system
is embedded.
Physiological arousal is a precondition for emotion, but which emotion will be
experienced depends on the way the arousal is interpreted; it is arousal and meaning
(interpretation) together that make up the experience of emotion (D’Andrade, 1995). In
other words, all the differentiation between different emotions is in the appraisal
(interpretation); an appraisal is the activation of a schema and cultural definitions generally
affect the appraisal system; the primary appraisal is innate and gives rise to a “felt
organismic response”, while secondary appraisals based on cultural models (cultural
frames) have a large effect on the total gestalt that makes up the conscious experiences of
an emotion (D’Andrade, 1995). In this regard, it is important to investigate how HIV positive
MSM interpret their diagnosis, through which the cultural frames around HIV/AIDS can be
explored in depth.
The management of negative emotions has been identified as a central adaptive
task for PLWH (Siegel & Schrimshaw, 2000). Emotion-focused strategies of coping may be
particularly important and effective for PLWH because they often can have little actual
control over the course of illness itself and need to endure the situation of being HIV
positive (Taylor, Helgeson, Reed & Skokan, 1991). Cancer patients’ perception of control
over their emotional state has been shown to be the most substantial predictor of general
psychological adjustment, even more important than perception of control over the disease
itself (Siegel & Schrimshaw, 2000). Thus, cognitive forms of emotion-focused coping may
be particularly important to understand HIV positive MSM as they attempt to gain control
22
over their negative emotional reactions. Coping is not just a predictor of adjustment, but
also an interesting phenomenon that is embedded in social and cultural circumstances.
Actual stressor-specific coping strategies need to be explored, which may provide rich
information for therapeutic application. However, very little is known about the specific
coping strategies that newly diagnosed HIV positive MSM in China adopt to help them to
achieve or sustain a satisfactory level of emotional well-being in their daily lives.
Based on cognitive anthropology (D’Andrade, 1995), a general argument is that it is
through linkages with emotion and motivation that cultural schema affect human action
(emotion—motivation—motion). Human behaviour is motivated, and a general method of
identifying motives is by their goals. Some cultural schemas function as goals for
individuals. The goal functions of schemas are related to the way schemas form
hierarchies. The role of top level schemas will usually be to determine action, since that is
the basic function of interpretations. At the top of the interpretive system are schemas
which function as a person’s most general goals, such as love, security, play, being healthy,
having some protection from the attacks of others, and maintaining relationships which
instigate action relatively autonomously. Instead of seeing every action as the outcome of
a limited number of universal motives/goals, action is seen as the outcome of a
hierarchical network of goal-schemas. Identification plays an important role in the
development of motivational force. In this regard, in order to understand the behaviour (e.g.
condom use or no condom use) of newly diagnosed HIV positive MSM, it is important to
explore the motivations/goals and emotions behind their behaviour.
Behaviour means an uninterpreted or minimally interpreted camera-eye or
recording device description of events, while human action means an interpretation of
events in terms of human intents and purposes (Rozycki, 2006). Behaviour denotes
23
predictable regularity in human activity, and human action bespeaks the unpredictable,
purposeful and autonomous realm (Bernstein, 1977). Actions are often defined as
deliberate (or intended), and the distinction between deliberate action and reflexive
behaviour is closely related to the distinction between voluntary and involuntary behaviour.
The focus of action (deliberate behaviour) is another modification in the aforementioned
social ecological model.
1.6.5 Action world and its role in health behaviour
The importance of the cognitive world influencing people’s behaviour has been
highlighted in medical anthropology and social ecological models. Other scholars from
anthropology, sociology, psychology and nursing studies conceptualize the world of
everyday life (Schutz, 1971 cited in Good, 1994), or the assumptive world (Janoff-Bulman,
1992; Cohen, 1993). This common-sense reality “is characterized by the natural attitude,
on in which objects are taken-for-granted rather than submitted to critical attention, as in
the scientific attitude” (Good, 1994:124). It is based on commonsense knowledge of
everyday life and the deep-rooted belief that what has been true will continue to be true
(Cohen, 1993).
“At the core of our internal world, we hold basic views of ourselves and our external
world that represent our orientation toward the ‘total push and pull of the cosmos’. Surely
our basic assumptions may be more private and less elegant than theories that guide
scientific observation and research; yet they are no less important as guides for our
day-to-day thoughts and behaviors” (Janoff-Bulman, 1992:4). This assumptive world
consists of a relatively stable cognitive world of accumulated knowledge, values, beliefs
and expectations and an action world of predictable events, routines, behaviour and social
24
relationships. It is the taken-for-granted world that serves as a frame of reference for
interpreting past and present experiences and for anticipating things to come (Cohen,
1993).
Janoff-Bulman (1992) pointed out that behaviour and activities of survivors in the
aftermath of trauma have the potential to provide some evidence of a world in which the
victim can sometimes make a difference, and it is by taking action, rather than giving up,
that survivors can get constructive feedback about the possibilities of a benevolent,
meaningful world and a worthy, effective self. In this regard, taking action could be an
important aspect of recovering among newly diagnosed HIV positive MSM. The
exploration of actions can potentially provide rich data that demonstrate how newly
diagnosed HIV positive MSM go back to normal functioning.
A human conduct, toward the implementation of the person's intention, is named an
"intentional activity" (Zen’Ya, Hui & Hassan, 2007). It has been argued that intentional
activities—practices in which people actively and with effort choose to engage—may
represent a more promising route to lasting happiness (Dunn, Aknin & Norton, 2008).
Studies show that 40% of individual difference in happiness is determined by intentional
activities (Lyubomirsky, 2008: 20-22). This leaves 40% of our capacity for happiness within
an individual’s power to change. Intentional activities have been widely used in positive
psychology as an important measure of intervention, and positive psychology intervention
does indeed significantly enhance well-being (mean r=.29) and decrease depressive
symptoms (r=.31) (Sin & Lyubomirsky, 2009). Another study even argued that sustainable
happiness is possible through intentional activity changes, more than through
circumstantial changes (Sheldon & Lyubomirsky, 2006).
25
1.6.6 Social control/social order
Cognitive adaptation theory and self-control theory both are concerned more about
intrapersonal factors in influencing people’s behaviour. It is also necessary to investigate
interpersonal factors, which essentially discuss relationships in family, work groups,
friendship networks, institutions (organizations), communities and the public. Asymmetric
power relationships in social control (social order) and identity control (identity politics) are
highlighted.
In social control theory, a central theme is that people are constrained from violating
norms, rules and laws to the extent that they are integrated into the conventional social
order (Aday, 1990). The question of social order, or social control, is how modern societies
might influence their members to see their own individual self-interests as more or less
compatible with the collective interests of their society; hence the question of social control
is precisely the question of how modern societies might remain orderly through the rational
force of persuasion. Travis Hirschi (1969) describes four ways in which people become
bonded to society: through attachment to others; through a commitment to conformity;
through involvement in conventional activities; and through beliefs in the validity of the
rules and laws.
For HIV positive MSM, some choose to attach to community-based grass root
organizations or NGOs, while some of them may keep their distance from these
organizations. This will then restrict them from obtaining social resources and support.
Some MSM undergo stimulated resistance, and develop anti-social emotions and
behaviour “…depending upon the characteristics of the network and the characteristics of
the individual, individuals may be attracted to what are perceived as more deviant
26
networks because they are perceived as being more accessible, or because the deviant
networks occupy positions of relatively high status, or are more influential within a given
setting” (McLeroy, Bibeau, Steckler & Glanz, 1988: 358). Some HIV positive MSM may
have closer contact with HIV positive groups who have more negative attitudes and beliefs
in society. This points out the importance of developing a healthy MSM community and
facilitates HIV positive group development.
Modern societies are never as integrated or as harmonious as the aforementioned
imagery suggests; instead more powerful factions regulate less powerful factions, not in
the collective interest but in their own self-interest; and the powerful factions rely on the
definitional or “labelling” activities of “moral entrepreneurs” and other elite members (e.g.
professional groups) of society with a stake in seeing certain activities condemned and/or
curtailed (Weinberg, 2007). This is the root of stigma and discrimination against
marginalized and less powerful populations and individuals, such as HIV positive MSM
who are under screening and surveillance in the name of HIV prevention. A key issue is
about power relations. In this regard, it is necessary to explore the concept of stigma.
1.6.7 Stigma
Stigma refers to the devalued status that society attaches to a condition or attribute
and it is very much about the socially constructed meanings associated with the
discrediting characteristic (Steward et al., 2008). Stigma is typically a social process,
experienced or anticipated, characterized by exclusion, rejection, blame or devaluation
that result from experience, perception or reasonable anticipation of an adverse social
judgment about a person or group (Scambler, 2009).
27
The social aspects of stigma incorporate the moral standing of both individual and
collective actors defined within a local context, and stigma is embedded in the moral
experience of participants, whereby stigma is conceived as a fundamentally moral issue:
stigmatized conditions threaten what matters most for those in a local world (Yang &
Kleinman, 2008). Stigma therefore jeopardizes an actor’s ability to mobilize social capital
to attain essential social statuses. The construction of stigma involves the marking of
significant differences between categories of people, and through such marking, they
insert in systems or structures of power, and it is only by exploring the relationships
between these different categories that it becomes possible to understand stigma and
stigmatization not merely as an isolated phenomenon, or expressions of individual
attitudes or of cultural values, but as central to the constitution of the social order/social
control (Parker & Aggleton, 2003). The precise mechanisms by which a stigmatized
condition might lose face in a local setting (e.g. through the above stigma dimensions or
local meanings such as those attached with perceived ancestor misbehaviour) remain a
critical area of investigation, and the linkage between stigma and social capital remains
largely unarticulated (Yang & Kleinman, 2008). In the Chinese context, MSM and being
HIV positive are taboo and two serious consequences of losing face. The difference
between the general public and MSM is stigmatization against non-heterosexual practices,
which is embedded in a Chinese culture of lineage and related obligations, such as filial
piety. This is the fundamental basis of moral judgment in Chinese culture. The difference
between HIV negative and positive people is blaming the victim, which is embedded in a
Chinese culture of retribution (wages of sin). These moral judgment-based differences
between general people and HIV positive MSM form important parts of the cultural frame
around HIV/AIDS in China.
Scambler’s (1989 as cited in Steward et al., 2008) hidden stress model emphasizes
28
three ways in which individuals experience stigma: (1) enacted stigma, a kind of
interpersonal interaction, refers to overt acts of discrimination and hostility directed at a
person because of his or her perceived stigmatized status; (2) felt normative stigma, a kind
of intrapersonal experience of stigma, refers to the subjective awareness of stigma and it is
expected to motivate individuals with a stigmatized condition to take actions to protect
against enacted stigma; (3) internalized stigma refers to the extent to which an individual
accepts stigma as valid. When stigma is internalized by members of the non-stigmatized
majority, the result is prejudice toward the stigmatized. When it is internalized by
stigmatized individuals themselves, the result is self-stigma. For HIV positive MSM,
experiencing enacted stigma may increase their risk of psychological distress, such as
depression, and stimulate anger and revenge as a way of resistance by the stigmatized.
Felt normative stigma may lead them to monitor and modify their behaviour, usually with
the goal/motive of trying to avoid future enactments of stigma. Internalized stigma may be
associated with psychological distress both directly and indirectly, because it prevents
them from seeking social support and other needed resources. Self-stigma may reduce
their self-esteem, and internalizes shame and irresponsibility. HIV/AIDS as a socially
disgraceful disease deteriorates other negative social/life experiences, such as low social
economic status, migrant/rural status and sexual minorities. HIV/AIDS-related stigma is
often layered upon other stigma, such as sex work and drug use. In this regard, layer
stigmas may exist among HIV positive MSM, which include stigma against HIV/ADIS,
homosexuality, sex work, poverty, migrants, and substance use (Parker, Aggleton, Attawell,
Pulerwitz & Brown, 2002).
1.6.8 Identity control
When power is most effective, social control is impossible to distinguish from
29
self-control because those who are controlled are complicit in the control that is exercised
over them and do not resist (Weinberg, 2007). Social norms (i.e. moral obligation) are
internalized through the incorporation of the expectations of others (especially significant
others) into people’s psychic structure, so that significant social order operates from within
rather than from without. Social control exercised not through physical force, but through
the production of conforming subjects and docile bodies, which was described as
“subjectification” by Foucault (1977, 1978). Where there is domination, there is resistance.
In terms of HIV/AIDS prevention and intervention, an important strategy to avoid resistance
is to provide client-centred services and present the subjectivity of MSM in the whole
HIV/AIDS campaign. It is necessary to investigate the process by which and from which
MSM shape their identity and thereby inform their self-views.
Identity control theory (ICT) focuses on the nature of persons’ identities (who they
are) and the relationship between the persons’ identities and their behaviour within a
context of the social structure within which the identities are embedded. An identity is a set
of meanings applied to the self in a social role or as a member of a social group that
defines who one is (Burke & Tully, 1977). Central to ICT is the concept of meaning around
which identities are formed. What does it mean to be “MSM” and “HIV positive”? The
bases of identity include personal identities, role identities and social identities, and we are
often all of these at once: a biological being who is a group member in a role (Burke, 2007).
Each identity is a control system with four components: 1) a set of meanings for a given
identity; 2) self-defining meanings; 3) the discrepancy between the given identity and
self-defining meanings; 4) people acting to verify or confirm their identities (Burke, 2007).
Castells (1997) discussed identities from a more power-related and postmodern
perspective and distinguished three types of identities: legitimizing identities, which are
30
“introduced by the dominant institutions of society to extend and rationalize their
domination vis-à-vis social actors”; resistance identities, which are “generated by those
actors that are in positions/conditions devalued and/or stigmatized by the logic of
domination”; and project identities, which are formed “when social actors, on the basis of
whatever cultural materials are available to them, build a new identity that redefines their
position in society and, by so doing, seek the transformation of overall social structure”.
Moreover, multiple identities are arranged into a hierarchic control system, where
higher-level identities act as general principles that guide the programmes of lower-level
identities. Normally higher-level identities include such master statuses as one’s gender,
race, or class, and many person identities (Burke, 2007). Social relationships are essential
aspects of social identity, and they provide important social resources, including emotional
support and information, access to new social contacts and social roles, and tangible aid
and assistance in fulfilling social and personal obligations and responsibilities (McLeroy,
Bibeau, Steckler & Glanz, 1988). In this regard, it is important to pay attention to
hierarchies within MSM communities and HIV positive groups, such as poor and rich,
handsome and ugly, masculinity and femininity, etc. These hierarchies build up the basis
for social relationships establishment among these populations.
Identity can be presented in illness, such as HIV/AIDS. Illness identity is an
important component of illness representation (Weinman, Petrie, Moss-Morris & Horne,
1996; Broabent, Petrie, Main & Weinman, 2006). Some HIV positive MSM may refuse the
identity of being HIV positive, or even deliberately avoid contacting HIV positive groups.
Some HIV positive MSM may develop a strong identity of PLWH, and actively take part in
HIV intervention as volunteers. Some HIV positive MSM may negotiate a social identity of
being a well behaved and good person with themselves and always remind themselves
31
not to hurt others and consistently use condoms for anal sex.
Carter (1996) asserted that identity is integral to risk perception and management.
Identity and context are crucial ingredients in the management of social risk. Who one is,
where one is, and who one is with largely determine one’s perception and management of
the social risk of being HIV positive, and dictate the extent to which HIV is incorporated
publicly and privately into one’s identity; in the illness stage, those with visible symptoms of
AIDS may have little option but to incorporate HIV/chronic illness into their identity; at the
asymptomatic stage, they prefer to keep HIV out of their public identity or private identity
too (Green & Sobo, 2000: 200-204).
1.6.9 Research framework
Based on the aforementioned discussion, a social ecology-based conceptual
framework integrates concepts of cognition, control and action. This framework is
structured on different levels, from behavioural interaction to inter-subjective interpretation,
and to asymmetric social relationships. It is also operated in multi-dimensions, from social
norms and expectations to self-desires and needs in a specific setting, from primary active
strategies to change stressful situations to secondary acceptance of HIV positive, from
control over HIV seropositive status to control over the consequence of seropositive, and
from given identities or labels to self-defining meanings.
32
Figure 1 The framework flow chart:
This ethnographic study aimed to examine three major issues among newly
diagnosed HIV positive MSM: psychological and mental health, sexual risk, and health
service seeking as outlined in the research framework above. An important principle of
ecological perspectives on health behaviour change is that ecological models are most
powerful when they are behaviour-specific (Sallis, Owen & Fisher, 2008). Factors or
variables are specific to behaviour, and lessons learned with one behaviour may not
translate to other behaviour. In this regard, different factors or variables related to different
issues are arranged separately based on this modified social ecological framework.
In psychological and mental health issues, social ecology includes variables such
as biomedical issues, problems related to MSM circles, socio-economic issues, enacted
stigma, relationship development, multiple levels of acceptance and support, and effective
counselling. The personal cognitive world includes variables, such as HIV/AIDS-related
perception, internalized negativities, internalized cultural meanings and social norms,
active and optimistic cognition and emotion, and cultural ideology. The personal action
world includes variables, such as substance use, struggling in sex, intimacy and
non-serostatus disclosure, facing up to the trauma, and intentional activities.
33
In sexual risk issues, social ecology includes variables such as norms among HIV
positive MSM, difficulty in looking for a lover or stable partner, anonymous sexual
encounter, socio-economic status, law regulations and legal actions. The personal
cognitive world includes variables such as psychological and mental health status,
misconception of risk, moral judgment, establishing self-esteem and dignity, personal
growth, and fear of getting into trouble. The personal action world includes variables such
as cruising tongzhi saunas, not disclosing serostatus, condom use negotiation, substance
use, and practices of self-protection. Partners refusing to use condoms and no condom
available at the moment of having sex are triggers.
In health service seeking issues, the social ecological model includes variables
such as a strong ideology of controlling MSM population in health care institutes, lack of
specific funding for MSM community development, lack of technical support for MSM
communities, collaborations, suffering among health care providers, absence of specific
health services, socio-economic status, free health services, volunteerism and family care.
The personal cognitive world includes variables such as lack of concept of health services,
low awareness of some health problems, fear of serostatus disclosure, mental health
status, perceived health or effectiveness and attitudes. The personal action world includes
variables such as being accompanied by peers and friends, sharing information with peers,
and having partners or lovers.
1.7 Goals, objectives and research questions
Goals
The primary goal of this qualitative study is to understand the experiences of being
34
newly diagnosed HIV positive among the MSM population, so that culturally competent
and socially effective prevention and intervention measures and strategies can be
developed to address the issue of secondary HIV transmission.
This qualitative study adopted an ethnographic approach, and used multiple data
collection measures, such as participant observations, repeated in-depth interviews,
informal interviews and focus group discussions to investigate the psychological and
mental health adjustment, detailed patterns or changes in HIV-related risky or protective
behaviour and utilization of health services among newly diagnosed HIV positive MSM in
Shenzhen, China. Ethnography can be defined as a method of research in which the
researcher ‘participates, overtly or covertly, in people’s daily lives for an extended period of
time, watching what happens, listening to what is being said, asking questions; in fact
collecting whatever data are available to throw light on the issues with which he or she is
concerned’ (Hammersley & Atkinson, 2007:3). The first aim of an in-depth observational
study in anthropology is to produce an account of a social setting that is faithful to the
perspectives of the participants (Green & Thorogood, 2009:151).
Objectives
(1) To explore the adaptation processes of being newly diagnosed HIV positive in
terms of psychological and mental health, sexual risk, and health service seeking;
(2) To explore positive and negative factors associated with the aforementioned
adjustment processes;
(3) To understand the occurrence of UAI, an important cause of secondary HIV
35
transmission, in the backdrop of interaction among psychological and mental health,
sexual risk and health services utilization;
(4) To give recommendations to research-based prevention and intervention
strategies and measures to deal with the issue of secondary HIV transmission among
newly diagnosed HIV positive MSM.
Research questions
Primary research questions
(1) How do newly diagnosed HIV positive MSM perceive and interpret their
seropositive status socially, culturally and biomedically?
(2) What is their adaptation process and how do they adjust to the initial diagnosis
of HIV positive status in terms of psychological and mental health, sexual risk, and health
service seeking?
(3) How do these perceptions, interpretations and adaptations affect their
psychological and mental health, sexual behaviour, and health service seeking behaviour?
Secondary research questions
(1) What social and cultural circumstances do newly diagnosed HIV positive MSM
live in, in terms of a migrant society, diverse culture, political situation, health care system,
MSM communities and tongzhi subculture?
36
(2) What do newly diagnosed HIV positive MSM experience initially after the
diagnosis? And what processes do they need to go through?
(3) How do they adjust to the HIV diagnosis psychologically and mentally? What are
the positive and negative factors associated with their adaptation process?
(4) How do they adjust to the HIV diagnosis in the aspect of sexual risk and
behaviour? What are the positive and negative factors associated with their safer sex and
unsafe sex practices?
(5) How do they adjust to the HIV diagnosis in the aspect of health service seeking?
What are the positive and negative factors associated with their health service seeking?
(6) What are the implications and recommendations for secondary HIV transmission
prevention and intervention among newly diagnosed HIV positive MSM?
37
Chapter 2 Methodology
2.1. Entrée into the field
2.1.1 The start of the research
When I began my PhD study in School of Public Health and Primary Care (SPHPC)
in the Chinese University of Hong Kong (CUHK), I got to know Dr. J, who was a senior PhD
student in our school and worked on HIV/AIDS issues in Shenzhen. Through the
discussion and daily communications with Dr. J, I got to know that the MSM population in
Shenzhen is very big, and visible, and the Shenzhen CDC has paid great attention to
HIV/AIDS prevention and intervention. But staff in the Shenzhen CDC were confused that
HIV prevalence in the MSM population was still increasing, even though a lot of effort had
been made to target this issue. And they also found that there was a clear disparity
between condom use behaviour and HIV/AIDS transmission knowledge, so-called ‘zhi xing
fen li (知行分离)’ among Chinese MSM. Dr. J welcomed me to carry out my PhD study in
Shenzhen, and she also expected that my study could contribute to HIV/AIDS prevention
in Shenzhen. This made me feel that my study was feasible and meaningful. On the other
hand, Prof. Lau, my supervisor, had a good relationship and rich contacts with health care
professionals in Shenzhen. And he was familiar with the people who were working on the
HIV and MSM issue there. Mr. K, the leader of the Shenzhen Rainbow Workgroup
(SRW)—the biggest tongzhi (gay) volunteer workgroup in Shenzhen, was therefore
introduced to me. We then started cooperating with the SRW. Research funding was
mainly from the centre for health behaviour research in SPHPC, CUHK, and a small part of
funding was from a postgraduate study grant in the SPHPC.
38
On 25-26 June 2009, the China CDC and Shenzhen CDC organized a Training
Course for HIV/AIDS Surveillances and Investigation and Comprehensive Intervention for
the MSM population. It was in this training course that I got to meet Mr. K, and we had a
preliminary discussion about the study and general information in Shenzhen MSM
communities, as well as his general ideas and thinking on HIV positive MSM, such as their
needs, economic difficulties, social relationships after being diagnosed HIV positive,
emotional and mental health status, cultural stress, stigma, spoiled identity, and disclosure
and non-disclosure of serostatus. And we reached an agreement that the purpose of the
study needed to serve this population. Moreover, I asked Mr. K what I should pay attention
to when interacting with HIV positive MSM. The answer I got was that “they are generally
sensitive and easily upset, and they need more care and understanding”. I accepted his
suggestions and pushed myself to be more sensitive to my coming respondents. The
outcome of this meeting was that we exchanged our opinions and ideas, and therefore set
up our agreement to conduct a study on newly diagnosed HIV positive MSM in Shenzhen.
Mr. K was therefore one of my key informants in local community-based grassroots
organizations (CBO).
2.1.2 Pilot work
Following up this meeting, Mr. K arranged five respondents for me that month as
part of my pilot study. The interview venue was the SRW office in an apartment in a “Nong
Min Fang” (农民房 farmers’ housing) in CW, where there is a “Cheng Zhong Cun” (城中村
village in town) in Shenzhen. This was a small apartment with one meeting room, one
storeroom, one toilet and a function room, and its total area was less than 30 square
metres. My interviews were therefore conducted in the meeting room with the door closed.
39
Before the interview, Mr. K introduced me to the respondents, as well as a short
introduction of the study and its intention of caring for HIV positive MSM and fighting HIV
transmission. And then, I presented myself as a student and that my purpose was to learn
from them about issues and information related to HIV and MSM, so that more effective
measures can be developed to provide care for HIV positive MSM and control HIV
transmission. For example, I said, “we all know that more and more people are becoming
HIV infected. However, very limited studies have been conducted to understand what they
experience after becoming HIV infected, how they feel, and what difficulties they encounter.
I really hope that your experiences and stories can help us to understand what has been
going on.” I honestly expressed that I needed their support. I introduced myself as a
researcher who had been doing research on MSM and HIV since 2004; I am not surprised
by any behaviour or thinking since I have met many diverse people during these years; I
emphasized that there was no right or wrong in people’s life experiences; and I would not
judge people’s experiences, but instead what I did was understand people’s experiences
from their own perspectives. In the interview process, I always formally or discursively
emphasized that I did not understand something they did (e.g. UAI), and asked for more
details about the context, their immediate thinking and feelings. I engaged at all times in
respectful relationships and honestly tried my best to understand what they had done,
thought or felt. This strategy was demonstrated to be helpful later in interviews, since the
concept of understanding gradually overcame the concept of judgment. For example, I
always used the interview style: “now let’s goes back to that moment when UAI happened;
what was the circumstance?” I purposively directed respondents back to their memory, and
made them feel that they and I were together in a journey to explore a specific context,
which made them feel that they were explorers as well. This strategy significantly eased
the sensitivity and resistance of respondents. Many respondents therefore felt more
comfortable to talk about their private experiences, such as UAI, negative emotions or
40
thinking. In this regard, I tried hard to play the role of helper or facilitator to explore
experiences and memories together with respondents, which was more acceptable by the
respondents.
The first man I interviewed was Lang, a leader in an HIV positive MSM group.
Based on an introduction from Mr. K, this group was originally a sub-group of the SRW.
Since more and more men became infected, it therefore developed to be bigger and bigger.
Lang had been interviewed by some media. He clearly expressed the needs of PLWH,
such as free ART for everyone. However, I could also tell that he tried to avoid questions of
sexual behaviour and feelings, and tried to avoid talking about his family, such as his wife
(another respondent, Miao mentioned Lang had not disclosed his seropositive status to his
wife yet). Later, Lang and Mr. K met with argument, since Lang wanted to make the HIV
positive group, named the HPG, more independent, and the HPG did not allow the SRW to
intervene or take part in the affairs of the HPG. Mr. K criticized Lang’s leadership as not
open, and autarchic. My plan to visit the HPG therefore had to be cancelled. Ma was my
second respondent who was college educated. He was a money boy (MB), and he said
that sex work is work. He was quite open with me, and even directly asked for my email
address and phone number. But the time for the interview was limited and strictly
controlled by Mr. K. Actually Ma wanted to spend more time with me and talked more to me.
Since it was a collaboration with the SRW, I thought it was better to strictly follow the
schedule made by the SRW. However, in my formal fieldwork, I lost contact with Ma, and I
thought he left Shenzhen, since MBs move from city to city frequently.
The third respondent was Miao, a young man who had migrated with his parents to
Shenzhen when he was still a child. He was talkative, friendly, expressive, and had a rich
network in PLWH. At that moment, I realized he had the potential to be my key informant in
41
the HPG. Fang was a 20 year old handsome man. Mr. K had known him for quite a while
and they were in a good relationship. Before the interview, Mr. K and I had dinner in a
nearby restaurant, and invited Fang. After he arrived, he asked whether it was only him
being interviewed. I could tell that he felt embarrassed. Mr. K told him another one was
coming and would be arranged in the second interview. Gradually, Fang felt comfortable,
and expressed himself freely in the interview. Ren was aged 22, clean and white looking.
He had just been diagnosed HIV positive 9 days earlier. He was still emotional. He said he
would like to come because he trusted Mr. K. It was Mr. K who comforted him after his
diagnosis. After the interview, we met several times.
Except interviews, I also took part in some activities in the SRW, such as outreach
health education in gay bars. One night, Mr. K went out together with other volunteers,
such as FengFeng, KeKe, MuRong and me to L Bar. I saw that Dr. J was there when we
arrived. The team from the Shenzhen CDC arranged HIV screening in a KTV room. I got to
know other CDC staff there. I also had the chance to chat with some volunteers. A young
volunteer in his early 20s told me that he was from a great clan, and they have fame and
prestige in the locality, but that he was the only child of his parents, so he had to get
married to a girl one day. And he even negotiated with his mother that it was fashionable to
be homosexual (gao tongxinglian 搞同性恋) as a way of making a joke.
This pilot study was crucial. I obtained first-hand information about HIV positive
MSM, and explored some potential key informants, and became familiar with local
stakeholders, such as CDC staff, leaders and volunteers in grassroots organizations, and
had an instinct for MSM venues, such as gay bars and local tongzhi websites. All of the
information from this pilot study was utilized to modify my conceptual framework and
research protocol. It was a good start for the coming formal fieldwork.
42
2.2 The participants
The goal of qualitative research typically is to obtain insights into particular
educational, social and familial processes and practices that prevail within a specific
location (Connolly, 1998 as cited in Onwuegbuzie & Leech, 2007). Words that arise from a
study participant serve as sample units of data that represent the total number of words
existing from that sample member (Onwuegbuzie, 2003). Failure to collect an adequate
sample of words would help to yield a crisis of representation and legitimation (Denzin &
Lincoln, 2000 as cited in Onwuegbuzie & Leech, 2007). Many qualitative researchers only
conduct one interview session per study participant, with these sessions often lasting for
one hour or less (Onwuegbuzie & Leech, 2010). Onwuegbuzie and Leech (2007) contend
that power analyses should be used to assess the appropriateness of the units sampled,
and these units could be people, words, text, observations, events, incidents, activities,
experiences, social process or any other object of study. Morse (1994) recommends 30-50
interviews and/or observations for ethnographies and grounded theory research, and
approximately 100-200 units of observation in qualitative ethnographical studies. Other
researchers recommend 20-30 people in grounded theory (Creswell, 1998 as cited in
Onwuegbuzie & Leech, 2007); 3-5 focus groups and 6-10 individuals in each group
typically sufficient to reach saturation (Morgan, 1997 as cited in Onwuegbuzie & Leech,
2007). A study of sample size and saturation in PhD studies using qualitative interviews
showed that a wide range of sample sizes was observed, the median and mean were 28
and 31 respectively, the most common sample sizes were 20 to 30, and a guideline of
sample size is no less than 15 and under 50 (Mason, 2010).
43
Participants of newly diagnosed HIV positive MSM
Thirty-one newly diagnosed HIV positive MSM were recruited to join the repeated
in-depth interviews by means of referral via the SRW. The inclusion criteria included men
who have sex with men, diagnosed HIV positive in the past 6 months, aged 18 or above,
and being cognitively competent to participate. The exclusion criteria included men
younger than 18, not being cognitively competent to participate, or cannot verbally
communicate. A requirement of the recruitment was sent to the SRW and the respondents
recruited needed to cover different types of HIV positive MSM in Shenzhen based on
different income level, occupation, time of becoming infected (ranging from just diagnosed
HIV positive to diagnosed within 6 months), sexual identities, ages, sources of migration,
and degree of involvement in HIV positive group (e.g. NGO or QQ Group). For the detailed
characteristics of these respondents please see the following Table 1. And these
requirements were based on purposive sampling (Tongco, 2007) in order to enhance the
comprehensiveness of the data.
However, after finishing the repeated in-depth interviews, I found that limited cases
of UAI after diagnosis as HIV positive had been recruited, and the data in UAI was not
saturated yet. I therefore employed theoretical sampling (Draucker, Martsolf, Ross, & Rusk,
2007; Marshall, 1996) to recruit specific cases of UAI. It was through another channel,
which was different from the SRW, so that different groups of HIV positive MSM were
reached, and three more HIV positive MSM were recruited in one-time in-depth interview,
and two of them reported practising UAI. Therefore in total, eleven (24.4%) HIV positive
MSM reported UAI in the current study.
44
An edict of qualitative research is to collect data until saturation occurs. Saturation
is defined as “data adequacy” and is operationalized as collecting data until no new
information is obtained, which elicits all forms or types of occurrences, valuing variation
over quantity (Morse, 1995; Hammersley & Atkinson, 2007). Richness of data is derived
from detailed description, not the number of times something is stated. In order to reach
data saturation, two principles of sampling need to be followed: appropriateness and
adequacy (Coyne, 1997). Appropriateness is derived from the identification and use of the
participants who can best inform the research according to the theoretical requirements of
the study. In Shenzhen, the sex industry was blossoming, and money boy (MB) was
included. Based on information of newly diagnosed HIV positive MSM, MB was an
important component among those who were HIV positive. MB as a kind of important
occupation among MSM communities in Shenzhen therefore needed to be recruited in the
study. Adequacy is another principle for obtaining enough data to develop a full and rich
description of a phenomenon (e.g. adaptation process of newly diagnosed HIV positive
MSM), and it is therefore important to select information-rich cases for study in depth.
MSM who were working in a commercial sex setting needed to be explored as well. Based
on my fieldwork, MB had some kinds of differences with other MSM in response to being
HIV positive. The exploration of these differences would provide an angle to look at MSM’s
attitudes and behaviour, and therefore would provide new insight in this study. That is the
importance of comparing general and specific cases to find out new information. Moreover,
in the context of Shenzhen, MB has been generally a focus in HIV/AIDS campaigns. It is
therefore necessary to pay attention to this subgroup of MSM. Moreover, the MSM
population in Shenzhen was relatively homogeneous in terms of age and migration
experiences. Based on the argument of Guest, Bunce and Johnson (2006), a sample
12-16 cases is sufficient to reach data saturation in a relatively homogeneous group, such
as female sex workers in a country. In this regard, five more newly diagnosed HIV positive
45
MB were recruited in my one-time in-depth interviews through referral by the SRW.
Four special participants of MSM
Four respondents needed more justification. It needs to be pointed out that there
should originally have been 32 newly diagnosed HIV positive MSM referred by the SRW.
But in the process of interviewing, one respondent (Lv) self-reported that he was tested as
HIV positive in a screening test, but he did not go back to the Shenzhen CDC to have a
diagnostic test. From a clinical point of view, he should not be regarded as diagnosed HIV
positive. However, from an emic view (inside perspective), he should be accepted as an
MSM who regarded himself as HIV positive. Lv said, “I tested ‘uncertain’ in September last
year (2009), and tested positive in January this year (2010) at CD Hospital. …It was
uncertain in September 2009 and I have defined myself as having HIV already ever
since. …I take drugs and drugs are a way that makes somebody get AIDS most easily.”
And he also thought that he made his boyfriend get infected. He said, “it seems that I have
transmitted HIV to him (boyfriend) already. …He should get it already, because he always
gets a fever recently.” Based on his interview, I got to know that he was a close friend of a
key respondent (Wu) who had accepted participation in my repeated in-depth interviews,
and it was through the introduction of Wu that Lv agreed to participate in my interviews. Lv
and Wu were in a small group of methamphetamine users, and both of them were also
money boys or had experiences of being money boys. Moreover, an important justification
was that, from an emic view, Lv did not have knowledge of screening tests and diagnostic
tests, and he totally regarded himself as HIV positive after getting a positive result in a
screening test. From his data, it was clearly presented that he was going through a
process of adaptation to a newly HIV positive result, which presented no significant
difference with other clinically newly diagnosed HIV positive MSM. Lv described his
46
adjustment: “I was in a bad mood, and took drugs to escape it. …I ‘yi zhi huan bu guo
lai’(一直缓不过来 can’t accept the HIV positive result yet and feel very stressed). …He
(boyfriend) brought me to play games, browse the Internet, listen to music, always chatted
with me, and taught me how to be a human being and how to behave appropriately. He
helped me calm down and accept the result. I feel no fear now, no big deal.” Lv became
active in his sex work again, travelling to Shantou, Shenzhen, Shenyang and Chongqing.
Since Lv was a MB and substance user, and his experiences presented a close relation to
the themes of the current study, his data were still used in some important and closely
related themes.
Fan was another respondent recruited for a one-time in-depth interview. He was a
MB, and tested HIV positive in a screening test more than 12 months beforehand. He also
did not undergo a diagnostic test in the Shenzhen CDC but totally regarded himself as HIV
positive and joined a grassroots HIV positive group. He was close to the peer worker in this
group, and was referred to me by the peer worker. The management of his data was
similar to that of Lv. Ge, a MB, had been diagnosed HIV positive ten months before, and
since it was difficult to recruit newly diagnosed HIV positive MB, his data were also used as
a case of necessity. Lang was recruited in the pilot study and had been diagnosed HIV
positive 11 months before. Since he was an activist peer volunteer in an HIV positive group
and had rich experiences and knowledge about PLWH, his data were therefore used as a
case of necessity as well.
47
Table 1: Summary of the characteristics of respondents (HIV positive MSM)
Characteristics
Repeated
One-time
Total (N=45)
interviews
interview
18-25
9
10
19
26-35
19
2
21
36-40
4
1
5
1-2 months
15
3
18
3-4 months
11
4
15
5-6 months
5
3
8
0
3
3
1
0
1
Office
10
2
12
Service/seller
5
2
7
Technician
9
0
9
Labourer
4
1
5
Money boy
2
8
10
Jobless
2
0
2
College
8
3
11
High/technological
18
5
23
Secondary school
6
4
10
Primary school or
0
1
1
More than 6,000
3
1
4
3,000-6,000
13
6
19
Less than 3,000
14
3
17
No income
2
3
5
Homosexual
28
8
36
Bisexual
4
2
6
Heterosexual
0
3
3
Age
Time of diagnosis
More
than
6
months
Without diagnosis
Occupations
Education
school
less
Income (per month)
Sexual identity
48
Participants of health care providers
In health care settings, including the CDC system and related hospitals, group
discussions and face to face interviews were conducted. Months before visiting Shenzhen
CDC and its branches and grassroots offices, I sent a request to the officer of the office of
HIV/AIDS prevention and intervention and introduced my study and the content of the
coming interviews, and then asked for their consent and arrangement. Six staff members
of the Shenzhen CDC who were working on HIV/AIDS issues had been recruited in a
focus group discussion in their office. And then, the Shenzhen CDC contacted the district
CDC to arrange interviews for me. Four staff members from the district CDC who were
working on HIV/AIDS issues were interviewed in-depth face to face in their office or VCT
rooms. At the grassroots level—Fang Bao Suo (防保所 a special grassroots branch in the
CDC system in Shenzhen), four staff members were also interviewed, one in a face to face
in-depth interview in his office, and the other three in a group discussion in their office. In
total, 14 staff in the CDC system were interviewed. In hospitals, a total of six physicians
who were working on HIV/AIDS issues were interviewed face to face, including three
medical doctors in DH Hospital, and three medical doctors in CD Hospital. In total, 20
health care providers in health care settings were interviewed with tape recording.
Participants of tongzhi volunteers and peer workers
In CBO, a focus group discussion with six volunteers in the SRW, who had been
involved in caring for HIV positive MSM, was conducted. Informal interviews were
conducted with 10 volunteers, and a total of 16 volunteers were interviewed. Mr. K
announced in the SRW our cooperation in this study before I conducted formal fieldwork in
Shenzhen. Mr. K recruited six experienced volunteers and introduced the current study to
49
them. When I conducted the group discussion, I introduced the study and myself again, so
that informed consent was obtained orally. Some clients who visited the SRW office for
testing or consultations were also interviewed in an informal way.
In total, more than 80 respondents and informants were interviewed formally or
informally in this study.
2.3 Data collection
Participant observation
Participant observation means that the researcher learns about the social world
through direct engagement with it, and the extent to which the researcher actually
participates in social events and actually performs social acts depends hugely on the
nature of the research site (Atkinson & Pugsley, 2005). Ethnographic fieldwork involves an
array of data collection methods, including observation, natural conversations, various
kinds of interviews, and the interpretation of material culture (Green & Thorogood, 2009).
Participant observation started at the very beginning of the study, such as in the SRW, in
the CDC conference on MSM issues, at the dinner table, etc. I became familiar with the
staff, volunteers and some HIV positive MSM, and all of them consented to helping this
study. And I also got to know some situations of MSM issues in Shenzhen, such as limited
human resources in providing services to HIV positive MSM, overloaded work in local
CDCs, more tolerance of MSM in the CDC system, etc.
In participatory transects, I worked closely with key informants and stakeholders,
observing and asking for explanations of everything I saw, and taking notes as much as I
50
could on all aspects of the informants’ lives. I went into some respondents’ daily life
environment, such as their friends, their gathering venues, their homes and even working
environment. The language they used and the ways they communicated were also
included.
Based on the previous communication and interaction with the SRW, I became
increasingly familiar with Mr. K, Fang and Miao. Miao was an active organizer, and
previously he had organized some collective activities for MSM. After he was infected, he
felt much closer to other PLWH and spent much of his time with HIV positive peers. My first
batch of ethnographic observations therefore started from the two of them.
I divided the whole fieldwork into three sections. The first section was the period of
my staying with Ping, Chen, and Qiang in L District and BT Town. The second section was
the period of my staying with Tong, Jiang and Tu in F District. These two sections covered
nine months. The third section was that I moved back to CUHK and occasionally visited
Shenzhen, when I stayed out of the field and looked back on the field as an outsider again.
This facilitated balancing my etic and emic views.
At the very beginning of my fieldwork (e.g. pilot study), I had not found a place to
settle yet, and I had to stay in the 7 Days Inn close to the SRW office (the new office, the
SRW moved to HR Building and it was much bigger than the one in CW Village). When
visiting the SRW office in HR Building, I got to know Ye, a peer worker. He lived with Ping,
a volunteer in the SRW who was responsible for internet management. Ping told me that a
housemate of his was moving out in a week and I could stay in his apartment. Ye also
invited me to join them and told me that it was a duplex apartment, even though its
decoration was old. It was good for me since its location was just 15 minutes away by bus
51
from the SRW office. I therefore moved into his apartment and rented one of the bedrooms.
However, because of the changing plan in the SRW (the SRW failed to get funding from
the Shenzhen CDC to support full-time staff), Ye lost his job and he moved to another
province and settled in a temple. Ye was a Buddhist. Therefore, when I moved into Ping’s
apartment, only Ping and I lived in this apartment. Ping lived in the biggest room upstairs,
and I stayed in a small room downstairs, where the door could be locked since I needed to
keep all the information of my respondents safely and confidentially.
It was important to stay with Ping, since he had rich information about the SRW,
volunteers and MSM communities. And I always took part in SRW activities (in office or
outreach) with him, and became familiar with many other volunteers. I visited many MSM
venues (e.g. saunas, bars and parks) with volunteers in outreach or private. Ping also had
contact with some HIV positive MSM and we together invited an HIV positive MSM to have
dinner with us.
It was about one month after I moved in, that Ping got to know Chen, a newly
diagnosed HIV positive MSM, and Ping accepted him to be his ‘didi (little brother)’. Later,
Ping asked Chen to move in, and Chen took another room upstairs. Almost at the same
time, Ping and Qiang started a relationship. Qiang would visit us on weekends or when he
was free, and at that time, Qiang worked in a factory in B District. My long-term interaction
with Chen therefore started from there. Since then the relationship (e.g. friends, lovers,
rivals in love) between Ping, Qiang, and Chen became more and more complicated.
Gradually, complaint, distrust and emotions came out.
Six months later, four of us moved into a three-bedroom apartment in BT Town, far
away from downtown, almost 2 hours by bus. But we just stayed in this apartment for one
52
month. When these three guys were struggling in their relationship, I planned my departure.
Later, Ping and Qiang broke up, and Chen and Qiang moved into HX Housing, and I
moved to JX Garden and stayed with Tong and Jiang. My second part of fieldwork
therefore started.
JX Garden is located in F District, just a few minutes from L Park. Tong and Jiang
were in a relationship, and Jiang was newly diagnosed HIV positive. They set up their
relationship just after Jiang was diagnosed HIV positive. Tong and Jiang had very good
relationships with other volunteers, such as Tu, Chao, Ning, Ai, Mu, etc. And it was also
close to where Sun and Li lived. My staying in JX Garden opened another door for me in
my fieldwork, where I observed how a sero-discrodant Tongzhi couple lived together and
how volunteers and friends interacted with them. Even though more than 30 HIV positive
MSM accepted participation in my repeated in-depth interviews, not all of them would allow
me access to their daily life. In total, 12 key respondents/informants, such as Sun, Chen,
Jiang, Xu and Wu allowed me to take part in their daily life.
It has been found that anthropologists who stay in the field for at least a year are
more likely to report on sensitive issues like witchcraft, sexuality, political feuds, etc. (Raoul
Naroll, 1962 as cited in Bernard, 1995). And those anthropologists who have conducted
very long-term participant observation, in a series of studies over several decades, find
that they eventually obtain data about social change (Foster et al., 1979 as cited in
Bernard, 1995). Since I have been studying homosexuality and HIV/AIDS prevention in
China since 2004, I am familiar with the subculture of men who have sex with men in China,
especially in Guangdong. Therefore, a formal fieldwork in a period of nine months was
sufficient for my ethnographic study. Moreover, there was another period of time (about
three months) during which I went back into the field occasionally.
53
Interviews
Repeated interviews are a practical skill to reach data saturations. This is a very
important principle: the quality of the data and the number of interviews per participant
determine the amount of useable data obtained; the greater the amount of useable data
obtained from each person (as number of interviews and so forth), the fewer the number of
participants (Morse, 2000). In general, ethnography does not employ repeated in-depth
interviews instead of repeated informal interviews and natural communication (e.g. daily
talks). In the current study, in order to explore more in-depth the adaptation process of
newly diagnosed HIV positive respondents, repeated in-depth interviews were therefore
employed with three months between the first and second rounds of interviews. A life
history approach of in-depth interview was adopted. However, in order to avoid
over-historicizing the project at the expense of the ‘now’, life profiles were emphasized.
“Life-profiles” (Bernard, 2011) are organized around individual life narratives that provide
background and context to contemporary community life. They involve background
research, lengthy interviews and collaboration with the subject to ensure that the story is
told accurately and with a degree of depth and reflection relating to the life-world or social
themes. Two-time repeated interviews are therefore used to explore respondents’ life
profiles, which focus on contemporary life experiences.
Two rounds of individual face-to-face in-depth interviews were conducted among
newly diagnosed HIV positive MSM by me in the office of the SRW. Each interview lasted
for 1.5-2 hours. Each participant who completed the interview received 200 Yuan
(USD31.46) to compensate them for their time in the first round of interviews, and 300
Yuan (USD47.19) in the second round of interviews. Before each interview, I introduced
my study briefly and showed an informed consent form to my respondents to articulate the
54
purpose of the study, recording and confidentiality, and the principle of voluntariness.
Moreover, I also orally expressed my position as a researcher as neutral and
non-judgmental in relation to their behaviour or thinking and made it clear that real names,
home address, working unit/company address would not be asked for in the interviews.
After respondents signed the informed consent form, the interviews started.
At the beginning of the first round of in-depth interviews, Mr. K insisted on attending
my interviews, and the reason was that he believed that these respondents who were
referred by him only trusted him, and his attendance could make sure that the interviews
would go smoothly, and he also wanted to make sure that my interview was the same as
my proposal which was previously sent to him. He insisted that HIV positive MSM was a
very sensitive issue and he needed to manage it carefully. Therefore, I had to accept his
attendance in my interviews. When I conducted the interviews, usually Mr. K would keep
silent but he would interrupt me occasionally and asked questions that he felt of interest or
importance, but the way he asked was not considerate enough for the respondents. If his
questions really interrupted the flow of the interview, I stopped him or redirected the
interview. After the first three interviews, Mr. K realized that my interviews did follow the
guideline in my proposal and the respondents were fully respected, and he did not attend
the later interviews.
A detailed interview guideline was developed (see Appendix I). In the first round of
interviews, the guideline focused on more general information, expecting to draw out the
bigger picture of the circumstances where newly diagnosed HIV positive MSM were
situated, such as background information of the MSM communities, networks, health care
settings, and related authorities; their life history; and knowledge, attitude, services,
satisfaction of stakeholders, such as health care workers, volunteers and peers.
55
Based on a quick analysis of the data obtained from the first interviews, I raised new
questions to gain additional in-depth understanding of participants’ current situation and
changes since the first interviews. Therefore, I first explored respondents’ life, ideas,
emotion, and feelings, after the first interview, and then raised some specific questions,
such as stigma, discrimination and mental health questions, health seeking behaviour,
behaviour change process, self-reflection of being HIV positive, detailed sexual behaviour
and relationships, related Chinese concepts of ‘luan (乱)’, ‘lan (滥)’, ‘yuan(缘)’, ‘lian (脸)’,
‘ganjing (干净)’, ‘angzang (肮脏)’, etc. This repeated in-depth interview approach provided
rich information, which could be used for further explanations or interpretations. A case
specific approach was adopted and some questions were different among different
respondents.
One-time in-depth interviews were conducted among 11 health care providers,
including five CDC staff in district and grassroots offices and six physicians in hospitals.
Since they were arranged by their leader who I had contacted and obtained consent from
some days before, I therefore orally introduced my study and the purpose of the interview,
and all of them agreed to participate in the interviews. The content included their
HIV/AIDS-related jobs, their impression and attitudes towards MSM and HIV positive MSM,
their interactions with HIV positive MSM, their perception and comments on their jobs, their
suffering or difficulties, stigma and discrimination, relationship between physicians and
patients, etc.
Except the formal repeated in-depth interviews, informal interviews in more natural
settings were conducted. For example, when I took part in activities in the SRW office, I
had opportunities to chat with clients, volunteers and CDC staff, and the circumstances
were quite natural and normal. Moreover, when I had daily contact with respondents,
56
volunteers and other informants, our communication also formed part of the data.
Group discussions
Two focus group discussions, comprising six persons per group, were arranged for
peer workers or volunteers and Shenzhen CDC staff (health care workers). Six volunteers
of the SRW were recruited by Mr. K to join the first focus group in the SRW office; six staff
in the AIDS Prevention Office in the Shenzhen CDC, who served PLWH and MSM, were
arranged by their officer in the second focus group in their office. The discussions in these
two groups were moderated by me. An incentive of RMB200 (USD31.46) was given to
each participant to compensate them for the amount of time spent on their participation.
Each focus group session lasted for about 1.5 hours. For relevant questions for health care
providers’ focus group discussion please see Appendix II.
In LG district, when I visited a grassroots Fang Bao Suo, I was supposed to
interview one staff member who worked on the HIV positive MSM issue. But I found out
that they preferred to take part in a group discussion. I therefore changed my original plan
and carried out a group discussion in their office with three staff: one was a leader in this
office, and the other two were working staff. This instant group discussion provided more
in-depth information at the grassroots level.
Apart from formal focus group discussions, informal group discussion was also
utilized. When I conducted participant observation in the SRW office, a group of volunteers
and clients sat in a circle. I therefore instantly carried out a group discussion, and they
accepted it and even asked me some questions. For the volunteers’ focus group
discussion guide, please see Appendix III.
57
Secondary data
Data related to being MSM or being HIV positive were collected from websites,
journals, newspapers, government documents, etc. Content analysis (Green & Thorogood,
2009) was conducted and relevant themes were identified and utilized in the later
chapters.
Fieldwork extension in Boston, USA
I was awarded the global scholarship programme for research excellence CNOOC
grants for 2010-2011 in CUHK, and I therefore conducted a three-month (April to June,
2011) visit to Fenway Community Health (FCH) in Boston, USA. This visit was focused on
health services for the HIV positive MSM population, which provided experiences and
viewpoints from the prestigious health care centre for LGBT populations in the US as an
extension of my fieldwork. This visit covered several parts. First, I explored FCH through
meetings and discussions with researchers and staff; second, I took part in community
activities organized by FCH; third, I attended conferences and workshops in FCH; fourth, I
collected related materials and publications of FCH.
2.4 Data analysis
The data included four parts, in-depth interviews and focus group discussions which
were recorded by digital recorder, observation field notes, informal interview notes, text
from websites, media and other related materials. The audio-recorded interview data were
transcribed verbatim by three experienced helpers in Chinese and I as an experienced
researcher with qualitative and ethnographic knowledge reviewed the transcripts
58
immediately to ensure accuracy. My field notes in participant observations, key notes in the
interviews and memos were used as an audit trail (Rodgers & Cowles, 1993; Hammersley
& Atkinson, 1995) to check any discrepancies of the data. In addition the same helpers and
I finished all cases to lessen potential bias.
Thematic content analysis in the framework approach was employed in the data
analysis (Pope, Ziebland & Mays, 2000; Green & Thorogood, 2009). The first step was
familiarization—immersion in the raw data (or typically a pragmatic selection from the data)
by listening to tapes, reading transcripts, studying notes and so on, in order to list key
ideas and recurrent themes. Therefore, the field notes and transcripts were read many
times in order to become familiar with the raw data and develop a deeper understanding of
the content. Some themes emerged in this step, such as adjustment processes in
psychological and mental health after being newly diagnosed, occurrences of UAI
dropping significantly but still happening occasionally; some negative comments to health
care services; negative comments to MSM communities, the roles of formal and informal
health care delivery systems, etc.
The second step was identifying a thematic framework—identifying all the key
issues, concepts, and themes by which the data can be examined and referenced, and
these issues, concepts and themes became the labels for codes. This was carried out by
drawing on a priori issues and questions derived from the aims and objectives of the study
as well as issues raised by the respondents themselves and views or experiences that
recur in the data. The end product of this stage was a detailed index of the data, which
labelled the data into manageable chunks for subsequent retrieval and exploration. A
coding scheme therefore was developed. Coding, which includes being open, axial and
selective in sequence in order to break down, conceptualize, and integrate the information
59
in new ways, is the central process of data analysis (Corbin & Strauss, 2008). In the
current study, starting from the field, open coding was carried out by myself, and then
discussed with my two supervisors. After transcription of each case was finished, I printed
it out, read it thoroughly, coded it openly and jotted down labels in the margin of the
transcript. More than half of the cases underwent open coding thoroughly, in order to
develop a coding scheme. Codes include three kinds (Bernard & Ryan, 2010). The first
was structural codes that described things like features of the environment in which data
were collected and features of the respondents. The second was thematic codes, which is
the most common kind of code. Thematic codes show where the identified themes actually
occur in the text. New thematic codes emerging from the data were added to the list and
codes which did not fit the data were put aside, so that the codes remained grounded on
the data and developed content sensitivity. These codes were used to organize information
with respect to particular categories, questions or topics. The third code was memos.
Memos were used to record ideas and commentary in the coding process and in the
process of doing fieldwork. A coding list was developed, and then these codes were
reorganized hierarchically in a modified social ecological framework. Ecological models
are most powerful when they are behaviour-specific (Sallis, Owen & Fisher, 2008). Three
specific behaviour of adjusting psychological and mental health, sexual risk taking, and
health service seeking were associated with different factors, and therefore organized into
three specific frameworks from the same social ecological perspective.
The third step was categorizing and grouping—applying the thematic framework
(coding scheme) systematically to all the data in textual form by annotating the transcripts
with labels (names of the codes) from the coding scheme. Single passages of text can
often encompass a large number of different themes, each of which has to be recorded
and labelled, usually in the margin of the transcript. In the current study, based on these
60
three modified social ecological frameworks, different issues, themes, and concepts were
grouped into their related framework in relation to psychological and mental health, sexual
risk, or health service seeking. And then under categories of the above identified issues,
themes, and concepts, the related codes and quotations were grouped together by
copying and pasting in Word files and each quotation was attached with its case name and
page number. And the function of search in Word files was also used to retrieve these
identified codes and quotations. Each theme had its separate document (a Word file). This
was facilitated by the fourth step.
The fourth step was abstracting and synthesizing—rearranging the data according
to the appropriate part of the thematic framework to which they related. One of the
practices was charting. There is likely to be a chart for each key subject area or theme with
entries for several respondents. In the analysis of UAI, for example, a simple chart was set
up and quotations from 11 cases who reported UAI were rearranged based on a matrix of
partner types and reasons for UAI. Unlike simple cut and paste methods that group
verbatim text, the charts contained distilled summaries of views and experiences. Thus the
charting process involved a considerable amount of abstraction and synthesis. In the
current study, after codes and quotations were grouped under their related issues, or
themes, a further analysis was conducted to explore more hidden meaning and linkages
behind these issues, or themes. For example, in the part of psychological and mental
health, syndemic of HIV and related psycho-social and cultural conditions, resilience,
important social and cultural factors (e.g. migrant life, social suffering, cultural trauma,
stigma and discrimination) were further distilled. The captured data were then synthesized.
Finally, mapping and interpretation—using the charts to define concepts, mapping
the range and nature of phenomena, creating typologies and finding associations between
61
themes with a view to providing explanations for the findings. The process of mapping and
interpretation was influenced by the original research objectives as well as by the themes
that emerged from the data themselves. In this stage, core themes were separated from
periphery themes. Then, I went back to the text again to search for linkages between the
core themes and used negative case analysis to test the linkages or relationships for the
majority of the cases being investigated to build a theoretical model (Bernard & Ryan,
2010). For example, after key themes of psychological and mental health, sexual risk and
health service seeking were identified, I went back to the data set to look at their
relationships. It appeared that psychological and mental health influenced the perception
and practices of sexual risk and health service seeking; and health service seeking (e.g.
self-care) was related to sexual risk taking as well. This further analysis was utilized in the
last chapter to interpret the occurrence of UAI from a more comprehensive perspective
and wider context. When a theoretical scheme emerged, the study results were
generalized and applied to other settings (Morse & Field, 1995).
2.5 Rigour
Rigour is a core issue of all research, since all research must have truth value. In
quantitative paradigms, the criteria to reach the goal of rigour are validity, reliability and
objectivity; in qualitative paradigms, the criterion is trustworthiness (Yin 1994). Credibility
(reliability/true value) and conformability (objectivity/neutrality) are also highlighted as
major assessment criteria recommended by Lincoln and Guba (1985) for developing
trustworthiness in qualitative research. Verification strategies of rigour are used in the
process of research so that validity and reliability are actively attained, rather than
proclaimed by external reviewers on the completion of the project. These verification
strategies include investigator responsiveness, methodological coherence, theoretical
62
sampling and sampling adequacy, an active analytic stance, and saturation (Morse, Barrett,
Mayan, Olson & Spiers, 2002).
Rigour in the data collection process
In terms of investigator responsiveness, I have been trained in social anthropology,
visual anthropology, health social sciences (health psychology courses included), sexuality
study and public health. Moreover, I have been doing research on HIV and MSM since
2004. In the repeated interviews, after the first interview, digital recording was immediately
transcribed verbatim by three helpers who had BA degrees in social sciences and
experience in working with socially marginalized and vulnerable populations. Before the
second interview was conducted, I read through the transcription of the first interview and
developed a quick individually specific guideline. Field notes were firstly jotted down in
mini note books which I carried with me on hand. Later based on these key notes, I wrote
down more detailed field notes as much as I could. I was really sensitive and flexible in
carrying out my fieldwork. I was sensitive to the words that my respondents used, and then
I flexibly adopted their language to continue the interviews and communications. I was also
sensitive to the emerging new themes, and creatively captured them. For example, in my
proposal there was no planning for interviewing grassroots CDC staff. When I was in the
field, I changed to interviewing the most grassroots CDC staff, and used group discussions
based on the current circumstances. A theme of grassroots view of the HIV/AIDS
campaign therefore emerged. Several strategies of verification were also utilized. Multiple
data collection methods were used differently based on different settings. Repeated
in-depth interviews were used in a formal, confidential and comfortable office room to
explore respondents’ life history. Informal interviews and observations (participant or
non-participant) were also used to capture respondents’ instant ideas and normal
63
responses in more natural settings, such as at a dinner table, joining activities or walking in
a park. Focus group discussions were conducted in a more homo-generous group, while
informal group discussions were used as an instant response. In order to account for all
aspects of the phenomenon, mixed sampling methods of purposive sampling and
theoretical sampling were used strategically to recruit diverse respondents to reach data
saturation. Quick data analysis was conducted immediately in the field to make sure what
was known and what needed to be explored further.
Credibility refers to confidence in the truth of the data and the interpretation of data
(Lincoln & Guba, 1985). In this study, the interviews were conducted in Mandarin, and
interview guides were checked for content validity by my two supervisors and examined by
a panel of experts (3 people: public health academics, specialist nurse and supervisor)
prior to delivery to the main sample. Modifications were made according to timing and
language constraints. In addition, a pilot of five interviews from HIV positive respondents
independent of the main sample who matched the purposive criteria were employed and
modifications were also made before commencing the data collection. Credibility of the
findings was increased using an audit trail of field notes, transcribed interviews and the
completed results section (Wolf, 2003). The process of analytic memoing involved my
making a note of key thoughts, hunches and lines of enquiry during data collection, so
these memos could represent a form of audit trail.
Confirmability or objectivity means that the data represent the information that
participants provided, and the interpretations of those data reflect the participants’ own
voice (Lincoln & Guba, 1985). In the current study, confirmability/objectivity was
established by the audit trail, tape recording and the use of field notes, developing an
interview guide by consulting some experts and then piloting. Supervisors gave feedback
64
through progression of the study. The audit trail (Liamputtong, 2009) enabled a process by
which I arrived at the findings and interpretations to be visible.
Rigour in data analysis
Transparency and reliability
The data analysis process was a process of cooperation with my two supervisors.
Early in the data collection process, quick data analysis took place. Every week I reported
my progress to my supervisors by email and every two weeks I met my supervisor in his
office and had phone meetings with my co-supervisor to discuss my fieldwork. During this
period of time, my co-supervisor visited CUHK several times and we had face-to-face
in-depth discussions. My co-supervisor also visited Shenzhen to provide me field advice. A
regulation of SPHPC, CUHK is that PhD students need to present their progress in an
open seminar every term. My PhD research in different stages was presented five times
and these continuous presentations provided a clear idea of the progress and audit trail of
the study. The development of the modified conceptual framework was actually the result
of many data-based discussions among the three of us, where we reached agreement on
codes, themes and their relationships. In the part of psychological and mental health, I
obtained advice from a psychiatrist who was very experienced in HIV and MSM issues at
Harvard Medical School when I visited Fenway Community Health. Moreover, in reporting
the findings, quotations of raw data were presented in detail under their related categories.
And key findings were translated into English and the translated data were cross-checked
by supervisors. Through the above processes and practices, reliability was maximized as
much as possible.
65
Maximizing validity
A key approach to increase faith in validity is deliberately attempting to ‘test’
emerging theory through looking for disconfirming evidence (e.g. deviant cases). That is
why the current study tried best to recruit as much diverse newly diagnosed HIV positive
MSM as possible, including ethnic minorities, men who did not know how to use the
Internet, men who were illiterate, men who did not cooperate well with health care
institutes, men who did not present any emotion or stress after being newly diagnosed HIV
positive, men who were very emotional and practised revenge on others, etc. After a
comprehensive analysis of diverse cases, factors associated with the social ecological
model were recruited as much as possible. Providing enough contexts for readers to judge
interpretations is an important way of increasing credibility. The term “context” includes
social and cultural circumstances at the macro level, specific personal encounters at the
micro level, and also psychological, mental and spiritual status at the intrapersonal level.
The current dissertation first provides a detailed description of how the study started, how
the fieldwork was carried out, and how the data were analyzed. And then, detailed social
and cultural circumstances in Shenzhen, MSM subculture, HIV positive groups, and formal
and informal health care delivery systems were described. Specific personal encounters
regarding UAI were also described in detail. Moreover, UAI was also explored further in
relation to psychological and mental health, and health services. In other words, the
concrete behaviour of UAI was fully investigated and reported in multi-dimensional
contexts.
Comparative
Constant comparative data analysis was used, which is an approach whereby every
66
piece of data such as a section of an interview transcript was compared with others that
may be different or similar from it in order to theorize all possible relations among data
(Corbin & Strauss, 2008). Comparing cases within the same data set allows us to look for
regularities in the data (key themes), exceptions to these and to build typologies. And
comparing data within a case allows us to explore the contextual meaning of accounts. For
example, in the analysis of Xie, at the beginning of the interview (the first interview), he
said “It’s disastrous to transmit HIV to others. It’s really a kind of sin. If I transmit HIV to
others, I will feel guilty and not be able to forgive myself.” But later when our rapport was
better and the discussion was more in-depth, he actually admitted that he had practised
UAI several times with others. An important explanation was that it is difficult to look for
lovers or stable partners. Cross cases, both similarities and specificities were taken into
account (Green & Ghorogood, 2009:219). And then these cross-case comparisons
showed that many respondents did not have a boyfriend or lover and also they felt that it
was difficult to look for lovers or stable partners. Moreover, triangulation was also another
key verification strategy (Mathison, 1988; Guion, Diehl & McDonald, 2011). The data from
different sources were compared to look for similarities and differences, and then explored
further as to why they were different. Therefore interviews from volunteers and peer
workers testified to this point. Interviews of health care providers also testified to the fact
that the MSM population was looking for more social recognition and acceptance. After
these comparisons and triangulations, a key theme of difficulty in looking for lovers or
stable partners in MSM circles (HIV positive MSM circles included) therefore emerged, and
social structural violence (e.g. no legal protection of same sex couple relationships, and
social stigma and discrimination against homosexuality) that constructed this adverse
situation for MSM were also explored. The finding in the current study was also compared
with other studies, and therefore discussed the similarities or specificities in China.
Moreover, I looked at the data theoretically back and forth between macro and micro
67
perspectives, and reconfirmed my thinking by navigating between the research framework
and raw data, in order to form a solid foundation for theory development.
As Bernard (2006: 60) points out, the validity of any concept depends on two things:
(1) the utility of the device that measures it, and (2) the collective judgment of the scientific
community. The above mentioned concepts and strategies have been generally practised
for a long time by many qualitative researchers, especially anthropologists, and therefore
further justify its nationality in pursuing rigour in qualitative studies. Finally, COREQ, a
32-item checklist (Tong, Sainsbury & Craig, 2007), was used to check the current
dissertation to ensure an explicit and comprehensive reporting of the study. But the items
of transcripts returned and participant checking were not achieved. It was impossible to
return the transcripts to all participants to check the data and my arguments and then
obtain their agreement of my opinions. But one of my plans is to distribute my dissertation
to the SRW, my cooperator in this study, and ask for comments from them. And another
plan of mine is to provide training for SRW volunteers in their monthly training workshops
as a form of reciprocity to the local MSM communities.
2.6 Reflexivity
Reflexivity is an essential orientation of qualitative research (Green & Thorogood,
2009: 23). Before my formal fieldwork, I absorbed experiences in the pilot study and
became reflective and paid more attention to the following issues: overcoming fear,
researcher as a stigmatizer, rapport building and reciprocal relationship, balancing
researcher’s role with respondents’ expectations, switching back and forth between insider
and outsider roles, and being more sensitive.
68
Overcoming fear
I felt that there may have been a certain risk of becoming infected in my fieldwork,
and I felt that I experienced some kind of fear. I needed to overcome it. The strategy I
adopted was that I worked closely with volunteers in the SRW and staff in the Shenzhen
CDC, since they had worked on this issue for a period of time and set up a network. For
example, Mr. K was a senior and very influential stakeholder in the MSM communities in
Shenzhen, and moreover, he was a protective factor. It was much more feasible and safer
to start my fieldwork in this network. In terms of personal life, I used antiseptic mouthwash
more frequently and regularly as I thought the risk for me was mainly from my mouth since
I would have many opportunities to have food together with different types of people,
including HIV positive MSM.
After I finished my fieldwork, however, I laughed at myself and realized that my
previous worry of being infected accidentally was really innocent. It can be seen that a
scary stereotypical thinking towards HIV positive people, such as their negative life
attitudes, aggressive behaviour, and revenge on society, still dominates many people’s
minds, even an experienced researcher like me. Actually, in my fieldwork, the feeling of
fear disappeared gradually. I shared an apartment with two other MSM, one of whom was
HIV positive. Later, I hung out with other HIV positive respondents, and we had fun in the
KTV room very late at night as it had no bus back to the place where I was living, so I
therefore stayed overnight at their home. I even took a long trip to a remote area in LG
district to visit the home of my respondent. I found no problem at all.
69
Researcher as a stigmatizer
As mentioned previously, I as a researcher also feared HIV infection, and this worry
might be unconsciously presented in my behaviour when I interacted with the HIV infected
respondents. On the other hand, when I presented myself as a researcher who carried out
research on their HIV-related issues, it would strengthen the ideology that an HIV infected
person has the potential to hurt others and our society, and it would further stigmatize
respondents. This was a dilemma in my fieldwork. The strategy I used was to broaden my
research objective to understand respondents’ lives and health issues first. Starting from
daily life contact, both researcher and respondents underwent a gradual process of getting
to know each other, to communicate about subjects ranging from general topics to specific
issues. Also in this process, I overcomed fear and reduced further stigmatization of HIV
infected respondents. Therefore, in my first round of interviews, I generally focused on
exploring their migrant life, their experiences of being MSM, their comments on Shenzhen,
their thinking about the MSM community, ideas for the future, etc. I tried to make my
respondents understand that I was not judging their life; instead I was working hard to
understand them.
Rapport building and reciprocal relationship
Through daily life contact, such as meetings, shopping, group activities, etc., the
respondents and I were provided general social spaces, and rapport was built up gradually.
Respondents shared their stories with me; on the other hand, I also shared my knowledge,
information and personal experiences that were useful for the respondents. Moreover, I
listened to my respondents, and spent time around my respondents, which provided
psychological and social support to them. Through this approach, respondents had the
70
chance to speak out and it empowered them socially and psychologically. For example,
Xie found that there was no one to talk to after being diagnosed HIV positive, and he chose
me as the one to speak to. After our formal interviews, we still kept in touch. When he
wanted to say something, he would like to talk to me or chat with me through QQ. When he
felt free and released his pressures, I was also happy, since I could help my respondents.
The degree of rapport building is very important and needs to be managed very
carefully. When the respondents and I had a bad rapport, they would not talk to me; when
our relationship became too close, respondents might have more consideration,
expectations or personal desire for me, such as approaching me or worrying that I was
getting involved in their life and work. I therefore had to carefully keep my relationship with
the respondents at a moderate level—between generally good to very good, so that I could
be regarded as someone trustable to talk to and who would not have any effect on their
daily life and work. Only in this way would respondents like to openly talk to me. My identity
and self-defined role in this study was a mixed role of investigator, counsellor and a
median close friend to my respondents. Personally, I held the assumption that firstly newly
diagnosed HIV MSM need to go through a process of adjustment to the diagnosis;
secondly this adaptation process is embedded in wider social and cultural circumstances;
thirdly psychological and mental health status will influence health services utilization, and
then work together to influence sexual risk behaviour. I am interested in exploring the
interaction between such behaviour, factors and circumstances. And these assumptions
and personal interests might discursively have an influence on the process of data
collection.
Another way of being reciprocal in my study was that after building trust with my
respondents, I tried to lead my respondents to think more about their life, and pushed them
71
a little bit to be reflective about themselves, and expected that they could learn from their
previous experiences. But I only did this after I built up a good relationship with some of the
respondents. For example, Wu was a methamphetamine user, and experienced
complicated family struggles. After our first interview, we developed a better and better
rapport. He invited me to attend his wedding party (he and his boyfriend decided to
announce their couple relationship in the community, even though it was neither registered
nor protected by law). When he felt depressed, he phoned me directly. In this case, I tried
to use a psycho-analysis approach in the second round of interviews, which allowed him to
have a clear sense of his own life and where the problem was. I really hoped that he could
be conscious about his early life and learn from the drawbacks, and therefore rebuild his
life. And he also totally opened up to me.
Balancing the researcher’s role with respondents’ expectations
Since the respondents had been infected with HIV, it would be their concern that
they need some financial support to plan their future when medical treatments are needed.
It was another hard issue that put me in a dilemma. As a student, I had very limited
financial resources and it was impossible for me to provide personal financial support to
them. Therefore, it was crucial to present myself as a general postgraduate student at the
beginning. However, when I was in the field, the biggest expectation from my respondents
was not financial issues, but rather the expectation of helping them get access to better
ART. Since I was a PhD student in public health from Hong Kong, and they had heard that
the quality of ART in Hong Kong was better than that in Shenzhen, some of my
respondents therefore expected that I could help them get access to this high quality ART.
It really made me embarrassed, and I had to explain that I could not provide these ART
drugs to them, and I was not a medical doctor. Instead I was a postgraduate student doing
72
research on HIV/AIDS and related behaviour.
Moreover, respondents had their own imagined expectations about the interviews. A
few of them even challenged my questions. Chen was an example. In the second round of
interviews, he criticized the reliability of my research. He said, “sometimes I don’t even
know what I say (how can you rely on it)”, “it is not what the question is”, “you are at a loss
for words”. In this case, I needed more patience, and then I said politely, “ok, I can change
my questions based on what you think”, and “what in your mind should the questions be?”
And Chen said, “Well, I don’t know, it’s your research, and you should think about it.” Now,
it went back to me again. I realized that he had prepared something to talk about, such as
he liked to talk about his emotions and his unhappy relationship with his parents in the first
round of interviews, but it was not in my question list now. I stayed with him for quite a long
time since we lived in the same apartment, and he always mentioned his unhappy early life
to justify his behaviour, including multiple sex partners and therefore becoming HIV
infected.
Switching back and forth between insider and outsider roles
I was obviously an outsider, a participating observer at the beginning. I brought my
research framework to the field, and collected the data I thought useful to the research
objective, and then looked at the data in the sphere of disease prevention. However, I was
actually part of the fieldwork, my action, speech, and ideas would be presented in the field
and interacted with my respondents. This would affect respondents’ views about the
research, about their own concerns and needs. In this regard, I was also an insider.
In my fieldwork, in an informal group discussion, some informants asked some
73
questions about me, such as how I discussed my sexual orientation with my parents. I
shared with them that when I was around 15 years old, I told my mother that I felt that I was
a bit different from other boys since I had a special feeling for one of my male classmates.
Now, many years have passed, and my mother can understand me better. A volunteer also
shared similar experiences in disclosing his sexual orientation to his mother. This
discussion quickly went through the MSM network in the SRW, and many of them knew
about it. I was therefore generally accepted in this network. More importantly, one
volunteer later came out to his father that he liked men, and that he had a boyfriend. After a
candid communication with his father, his father accepted it. Another one came out to his
good friend and classmates in his college. Moreover, more and more volunteers and
respondents shared their experiences of coming out of the closet.
I needed to train my emic view, however,
since there was still a barrier between
the respondents and me in that my respondents were HIV positive, while I am HIV
negative, making it not easy for my respondents to accept me totally. But I have an
advantage in that I have experiences of being stigmatized and discriminated against, since
I have studied homosexuality and HIV prevention in China since 2004 and I took part in
tongzhi/gay rights activities in mainland China and Hong Kong. These experiences
facilitated identity acceptance with my respondents and also helped me to go deeply into
the respondents’ stories.
Being more sensitive in the fieldwork
HIV/AIDS is generally a very heavy topic for HIV positive MSM. Usually, they have
been tortured by being reminded about some darker sides of their psyche, such as how
they became infected or how they had unprotected sex with others. It was therefore a big
74
challenge in my fieldwork. Normally, before interviews, I would make it clear that the issues
we discussed included sexual behaviour and sexual feeling. When it got to the part of
sexual behaviour, I saw that some respondents felt embarrassed. I therefore expressed
my experiences in discussing related topics with other respondents, and made it very clear
that I understood any kind of behaviour and would not judge others’ behaviour and ideas
since what I was doing was understanding my respondents, instead of judging them. When
I communicated with the respondents, I learned from their language and used the terms
they used. For example, when interviewing a MB, I heard him use ‘sex worker’ to describe
his job, and I therefore used ‘sex worker’ throughout the interview. I showed my respect for
his job and identity. Moreover, in my fieldwork, I gradually realized many MSM in
Shenzhen, especially the young ones, were fashionable. I was criticized as not being
fashionable enough. In order to get on well with my respondents, I consulted friends in the
SRW, and went to a hair salon to have a trendy hair style and change my clothes.
2.7 Ethical considerations
Ethical approval was granted by the University Survey and Behavioural Research
Ethics Committee of the Chinese University of Hong Kong. Refer to Appendix IV for details.
Written informed consents (Appendices V and VI) were obtained from the participants. The
purpose and nature of the study were explained to them. After obtaining their informed
consent, tape-recording was used and all records were stored in a locked filing cabinet to
maintain confidentiality. Since the circle of HIV positive MSM is comparatively small, in
order to protect privacy, I didn’t disclose related information of one respondent to another
respondent. For example, Chen asked me about some information of another respondent,
but I refused and I told him if he really wanted to know, I needed to obtain consent from this
respondent first. Zhou was another example, and he asked me to introduce men to him
75
since he wanted to look for a sero-concordant boyfriend. I wanted to help him, and asked
another HIV positive MSM. After obtaining his consent, I provided his phone number to
Zhou. Participants were told that they could withdraw from the study at any time without
affecting the chances of receiving any services or treatments. Moreover, the SRW, the
grassroots organization of the MSM population, also took part in the evaluation of the
research proposal. The leader of the SRW took part in some in-depth interviews to make
sure it was acceptable. Moreover, the leader also introduced me and my study to many
volunteers in a meeting in the SRW, so that volunteers in the SRW also obtained informed
consent. For health care providers, informed consent was not obtained individually;
instead it was obtained through requests to their leader collectively. At the moment of
interview, oral explanation of the study and content of the interview was provided.
In a few cases, when respondents really felt uncomfortable to continue the in-depth
interviews, I shortened the interviews, even though they had signed the consent form
already. And then I tried to contact them again through informal discussions and daily
communications. I was also very sensitive to protect respondents’ personal identity, such
as identity of being a sex worker, or being a general human being. Anonymous
pseudonyms were used and other identified data (e.g. location) were also changed in
order to protect the confidentiality of participants, and related organizations and groups. In
this ethnographic study, I explored rich data through participant observation and I was
accepted by my respondents and the MSM communities in Shenzhen as a member of
them. I therefore felt that I had the responsibility to speak on their behalf, and presented
these data from their perspectives. In the whole study process, I experienced a role of
being a student who tried to learn about everything about respondents and their
communities, a role of being an insider who tried to represent respondents’ voices, and a
role of being a researcher who tried to develop a more objective and balanced
76
understanding of the subject matter. Digital data were stored on a computer and a mobile
hard disk that were locked by PIN. Printed papers that used the data were stored in lockers
in my office. After finishing the dissertation, these used papers were destroyed using a
paper shredder.
A role conflict appeared in my fieldwork. As a researcher, I should collect as much
data as I can, and as a member accepted by the MSM communities, I was treated as a
general member and expected to behave as such. For example, someone approached me
during the fieldwork since he treated me as a member of the local communities. It showed
that my rapport building was quite successful and it is good to collect data, but I chose to
withdraw a bit from participant activities with him and kept the relationship at the level of
good friends. I helped him to buy some medicine from Hong Kong, but I never stayed with
him at night. Another role conflict was presented in health care institutes and grassroots
organizations: I became embroiled in organizational disputes between clients and staff. I
had to be very careful and focused on being understanding and non-judgmental. I needed
to withdraw a bit from the role of community member and listened to health care providers
more
in-depth.
In
order
to
balance
the
tension
between
researcher
and
participant-observation roles, ethnographers can anchor and distance themselves from
both researcher and participant roles (Castellano, 2007). Anchoring (e.g. deepening
involvement in participant activities to gain acceptance in a member culture) and
distancing (e.g. withdrawing from participant activities to avoid over involvement with
members, which helps to minimize subjectivity and bias) strategies are useful
methodological tools for managing role conflict (Emerson & Pollner, 2001 as cited in
Castellano, 2007), which allow the fieldworker greater flexibility and skills for managing
encounters in challenging field sites.
77
Chapter 3 Social circumstances and MSM communities in Shenzhen
3.1 Population and economic circumstances
Shenzhen has been developed into a modern metropolis in its 30 years of history as
a special economic zone in Guangdong Province. It has been the fastest growing city in
China for three decades and one of the most rapidly evolving in the world. Based on the
12th Five-Year Shenzhen City Population Development Plan (深圳市人口发展“十二五”规划),
the total population in Shenzhen in 2010 was 13.1 million, among which the registered
permanent households numbered 2.594 million, the average age of its permanent resident
population was 29.9, and its real Gross Domestic Product (GDP) per capita was
USD13,000 (Shenzhen City Government General Office, 2011). According to the Statistical
Communiqué on the 2010 National Economic and Social Development of the City of
Shenzhen (Shenzhen Bureau of Statistics, 2011), GDP for the whole year reached
9510.91 billion yuan (USD1,496.07 billion), and the growth rate was 12.0% compared to
2009; the per capita disposable income of residents was 32380.86 Yuan (USD5,093.51),
and the real increase was 7.0% compared to the previous year after taking prices into
consideration.
Luo Hu and Fu Tian districts are the business centres in Shenzhen, while Bao An
and Long Gang districts are the industry hubs. According to my observation, those MSM
working in Luo Hu and Fu Tian are generally better educated and have higher incomes,
compared with those MSM working in Bao An and Long Gang districts who are mainly
factory workers. The income among MSM is very diverse. In the current study, a couple of
respondents can earn RMB10,000 (USD1,573) or more per month; many of them can earn
about RMB3,000 (USD471.9) per month, but some of them earn only about RMB1,000
78
(USD157.3) per month. Those active volunteers in the SRW generally had stable incomes.
The gay pink industry in Shenzhen
The sex industry (or pink industry) has been booming in Shenzhen. It is visible and
generally tolerated. In my fieldwork, I took a taxi and discussed “zhao xiao jie”(找小姐 go
whoring/looking for female sex workers) with the taxi driver. He said, “Dongguan (a city
near Shenzhen) was now under “yan da” (严打 anti-pornography campaign), so many xiao
jie (female sex worker) have stopped providing services temporarily. After yan da, they will
reopen again.” But the sex industry operated as usual in Shenzhen. A MB (Money Boy, a
kind of male sex worker) expressed his opinion about sex work in Shenzhen in my in-depth
interview that “shen me an chang? jian zhi jiu shi ming chang!” (什么暗娼？简直就是明
娼！What prostitutes-in-secret? It is prostitutes-in-the-open indeed!) Other MB mentioned
that more and more young men were engaging in the work of MB. Ge said, “90 hou (90 后
those born after 1990) have been coming out (to join the MB industry) so now, it’s more
difficult for MB like me (who was born after 1980) to have clients.” Leaders in local
grassroots organizations also recognized that Shenzhen has a more tolerant environment
for sex industries. When I went to tongzhi bars, I saw that many trendy young men lined up
there, and clients could pick them up at any time. They were very young, and I even
wondered whether some of them were more than 18 years old, and later I did meet with a
MB who had not reached 18 years old. It is a general comment that if a MB stays in a
tongzhi bar or club for more than two or three months he will be regarded as old and not
fresh in this bar or club anymore. New faces are generally preferable and MB therefore
floats very frequently from one venue to another venue and from one city to another city.
In my fieldwork, I got to know in an informal interview with a CDC staff member that
79
Shenzhen CDC conducted a mapping of MSM entertainment venues, such as bars,
saunas and clubs, and more than 60 venues had been identified. Other related pink
industry, including tongzhi travel company, sexual fun shops, and fashion salons, are also
developing well in Shenzhen.
3.2 Shifting political situation
Policy changes
An important law related to HIV/AIDS in China is the Quarantine Law promulgated
in the 1980s, which prohibited foreigners infected with HIV from entering China and aimed
to keep HIV/AIDS out of China. In 1995, the state approved the first policy document of
HIV/AIDS prevention and intervention—Advice on Strengthening HIV/AIDS Prevention and
Control, and behavioural interventions among PLWH and high-risk populations were
formally written into the document.
The 1997 Criminal Law deleted any specific reference to the crime of “liumangzui”
(流氓罪 hooliganism), which referred to a wide array of social offences and was often used
to penalize homosexuals (Li, 2006). And then, there were no specific laws prohibiting
“tongxinglian” (同性恋 homosexuality) in China, and any sexual act that occurs between
two consenting adults, and that is conducted in private, was unlikely to attract legal
sanctions. In 2001, CCDM-3 struck self-agreeable homosexuality from a list of psychiatric
disorders (Psychiatric Department of Chinese Medical Association, 2001). The issue of
respecting the right of MSM was once again suggested by scholars on AIDS/STI, and its
potential significance in the prevention and control of AIDS was further elaborated.
Seminars on MSM/AIDS were co-organized by the programme Friend, Chinese
80
Association of STD&AIDS Prevention and Control, and Beijing Gay/Lesbian Hotline in
2002-2003, and the first session of the China Conference for Control and Prevention of
AIDS/STD was also organized in 2001 (Zhang & Chu, 2005). More attention has therefore
been given to HIV and MSM issues in China. In 2001, sponsored by the Ministry of Health,
the first national HIV/AIDS and STDs conference was held in Beijing, which opened
sessions of HIV and MSM.
2003 was a cut-off point. After SARS, the top leaders in China realized the
importance of public health and HIV/AIDS prevention and intervention. It was also in 2003
when the Four Free and One Care Policy was issued. The Joint Assessment of China’s
AIDS Prevention and Control was released in 2004 (State Council AIDS Working
Committee Office & The United Nations Theme Group on AIDS in China, 2004), and it was
the first time in China’s history that the population of homosexuals was reported and
sexually active MSM was estimated to be 2%-4% of total sexually active males. In this
report, data on MSM were still limited, but HIV prevalence among MSM in cities of Beijing,
Harbin, Guangzhou and Shenzhen were above 1%. HIV/AIDS prevention and intervention
training was carried out in some cities, such as Hangzhou, Kunming, Nanjing, Shanghai
and Shenzhen. Hangzhou city firstly carried out VCT in bars where MSM gathered, and
Chengdu city carried out a comprehensive intervention programme among MSM. Some
cities also assessed the feasibility of VCT and care among MSM. Peer education, hotline
service, condom promotion, and mutual and self-help also started and NGOs were
recognized as an important power in HIV/AIDS campaigns. Premier Wen Jiabao visited
PLWH and shook hands with them, and he also called for providing “care and support” to
PLWH on CCTV. Later, HIV/AIDS prevention and intervention, as a focus on public health,
was recruited in the “11th five-year plan” and its related funding was included in the
budgets at all governmental levels; moreover, the HIV/AIDS prevention and intervention
81
funding was increased from RMB390 million in 2003 to RMB800 million in 2005 in the
central budget and the local governmental budget was also increased from less than
RMB100 million in 2003 to RMB280 million in 2005 (Office of the State Council Working
Committee on AIDS, China, 2005). Central government funding for the AIDS response has
been stepped up. Funding in 2008 and 2009 amounted to 1.07 and 1.22 billion RMB
respectively, and local governments are also continuing to allocate fund to the AIDS
response (Ministry of Health of the People’s Republic of China, 2010).
The theme of the 2009 and 2010 World AIDS Day was the same: “Stop AIDS Keep
the Promises”, which emphasized “rights, responsibilities and commitments”. It aimed at
strengthening leadership, committing responsibilities, and adopting more effective
measures, comprehensively fulfilling universal access to HIV prevention, treatment, care
and services support, initiating every section of society to actively share the work of
prevention and treatment, caring for HIV positive people, patients and their families, and
eliminating discrimination. This theme is closely related to a dominant political discourse
nowadays in China—“building up a harmonious society”, which is promoted by President
Hu Jintao.
President Hu Jintao and Premier Wen Jiabao visited PLWH. They hugged them and
shook hands with them. These anti-discrimination actions presented strong messages to
the public that HIV/AIDS is not scary and PLWH should be cared for. The government
actively takes the responsibility to care about its citizens, and the CDC is the major institute
to practise this responsibility. An HIV/AIDS prevention and treatment mechanism of
‘government leading, cross agency collaboration, the whole society jointly participating’
has been formulated. The government is acting to fulfil its promise to stop AIDS and
provide health care to PLWH nationally. On 24 April 2010, the China government removed
82
the immigration restriction of foreigners infected with HIV/AIDS, STI/STD or leprosy. This
government action was an important step in anti-discrimination against PLWH.
International programmes
The China Global Fund HIV/AIDS Program (2010) has been set up, and the China
CDC is the executive organization. From January 2010 to December 2015, maximum
funding of about USD509,000,000 will be spent on enlarging HIV/AIDS prevention,
treatment and care services, and promoting universal access to comprehensive HIV/AIDS
prevention and treatment services for high-risk populations and HIV positive people and
AIDS patients. The programme covers 31 provinces (autonomous regions and
municipalities). The target populations include “an chang” (暗娼 female sex worker),
injection drug users (IDU), MSM, floating populations, HIV positive people/AIDS patients
(children included) and pregnant women. Another programme, named “HIV/AIDS
Prevention and Care Services among disadvantaged floating populations in Seven
Provinces in China”, was set up from 2009 to 2014, with a total funding of USD61,413,199.
It aims at preventing HIV transmission and reducing the effects of HIV/AIDS in relation to
disadvantaged floating populations. Moreover, the China-Gates Foundation HIV/AIDS
Prevention and Intervention Programme, DFID and WHO have MSM and HIV-related
programmes in China.
In Shenzhen, from 2002-2005, the Shenzhen CDC conducted syphilis, herpes and
HIV pathogenic antibody testing in MSM venues, and behaviour surveillance among the
MSM population was also carried out in 2004 (Zeng et al., 2006). The SRW was set up in
2002 when MSM activists took part in these HIV/AIDS prevention and intervention
activities. From 2003 to 2004, sponsored by WHO, the Shenzhen Centre for Chronic
83
Disease Prevention and Control cooperated with the China CDC to conduct HIV/STD risk
behaviour investigation among the MSM population. Other programmes related to MSM in
Shenzhen include the China CDC-USAIDS GAP project on MSM investigation and
MSM-TLS
research,
Global
Fund-MSD
MSM
intervention
research,
Shenzhen
CDC-CUHK MSM investigation and Guangdong CDC-Shenzhen CDC Global Fund scroll
programmes.
Discussions about policy against stigma
China Central Party School (2009), the top Chinese Community Party school in
China, cooperating with Marie Stopes International and UNAIDS, conducted and published
“The China Stigma Index Report”. The report disclosed that 35.3% of government officials,
36.2% of teachers and 26% of medical staff had negative or discriminative attitudes
towards PLWH. The release of the report indicated that the China government had started
to put the issue of stigma and discrimination against PLWH onto its agenda. Scholars,
activists and the media took part in the discussion of stigma and discrimination issues.
Some PLWH, supported by NGOs or charitable organizations, actively took action to push
equal human rights in employment for PLWH. It has been reported in the Chinese media
that “the first lawsuit of equal employment of PLWH” took place in An Qing city, An Hui
province, China. Even though this lawsuit failed ultimately, it stimulated great social
attention and discussion. Many professors, doctors, lawyers and HIV ambassadors spoke
out, and supported the equal employment rights of PLWH. Pu Cunxi, an HIV/AIDS
ambassador, and a member of the national committee of the Chinese people's political
consultative conference (CPPCC) submitted a proposal of “Anti-discrimination needs to
start from protecting the equal employment rights of several hundreds of thousands of
PLWH”, and advocated government units, such as the Ministry of Health and its affiliated
84
units, to take the lead in employing PLWH, and pointed out the necessity to modify the
requirement of HIV/AIDS negative in the General Standards of Physical Check in Civil
Servants Employment (Zhao & Luo, 2011). Members of the CPPCC National Committee
also called on eliminating discrimination against people living with HIV/AIDS (CPPCC
Network, 2011). The responsibilities of government in anti-discrimination for PLWH were
highlighted.
Policy and discourse about MSM-related CBOs and NGOs
The Regulations of Social Organizations Registration (State Department of People’s
Republic of China, 1998) constrain the development of MSM-related CBOs/NOGs. Based
on this regulation, NGOs cannot register with governments independently, and they are
required to anchor a business unit in charge. In other words, there is no real NGO, but
instead they are affiliated organizations of the government. This situation is changing
gradually in some parts of China. Guangdong province is an example. The newly released
“Programme of Further Fostering the Development of Guangdong Province and
Standardizing Management of Social Organizations (Guangdong Province Civil Affairs
Department, 2011)” amended the regulation that starting from 1st July 2012, social
organizations, except some special fields, can directly apply for registration with the
Department of Civil Affairs, and no business unit in charge is required anymore. Moreover,
the discourses of harmonious society and HIV/AIDS prevention and intervention have
been utilized by MSM and PLWH to negotiate social recognition and health services.
However, gay rights/sexual rights are still a controversial issue in China, and no campaign
has directly tackled this issue yet, even though the concept of human rights is less
sensitive than before when human rights issues were usually regarded as anti-government
activities. The China government opens certain space for discussion of human rights and
85
tries to reinterpret the concept of human rights based on their own interests and
understanding.. An annual conference on sexuality study in China in Renmin University
was organized in June 2011 and the theme of this year was sexuality and human rights. It
was the first of its kind in China.
Some barriers to the HIV/AIDS campaign
However, some barriers for wholly social engagement in the HIV/AIDS campaign
were observed in my fieldwork. Firstly, a clear public fear of HIV and general ignorance of
HIV still existed. On 28 November 2010, Shenzhen City, Hong Kong SAR, Macau SAR,
and Guangzhou Railway Group hosted the “HIV prevention does not interrupt love”
charitable theme activity of the 23rd World AIDS Day, and NDDaily, Guangzhou Railway
Group, the Shenzhen CDC, and Shenzhen Broadcast and Television Group undertook
together the events. Volunteers were arranged to conduct health education of the public
(e.g. passengers) in Shenzhen Railway Station. A college student volunteer said that when
she talked about HIV/AIDS with the public passengers they still avoided discussing
HIV/AIDS and viewed it as a taboo. It is still a general perception that “HIV is not my
business and it is far away from me”. Secondly, moral doubt of providing free treatment to
PLWH still existed. A senior health care provider mentioned that some health care
providers wonder why they need to treat MSM so well (e.g. providing MSM free STDs
treatment)? Another physician working in a hospital also mentioned that some physicians
wondered why they need to provide free ART to HIV/AIDS patients, while patients suffering
from other serious diseases, such as leukemia and cancer, could not obtain free treatment
or medication. Thirdly, at a practical level, the HIV/AIDS prevention and treatment
mechanism of ‘government leading, cross agency collaboration, the whole society jointly
participating’ did not work well. A senior staff member in the CDC said that HIV/AIDS is not
86
just a medical issue; they therefore need to share much more responsibilities than other
departments. Sometimes they could not obtain strong and prompt support from other
departments or related authorities. For example, sex work is illegal in China, but CDC staff
have to collaborate with sex work venues to conduct health education and intervention
activities. They therefore need to negotiate with these venues on one hand, and seek
support from the Bureau of Public Security which conducts anti-sex work activities on the
other.
3.3 A migrant society
Migrants and “Hukou” (户口 permanent household registration)
The history of Shenzhen city is the history of migrants. Starting from 1980, migration
has been a major theme in Shenzhen. Since the Huko system (household registration
system) operates in a rural-urban dualism, migrants are divided into two groups, those with
registered residency, and those without. The first group is usually staff working in
government or other state-owned factories or working units and their families. This party
has the opportunity to share social and governmental resources as Shenzhen becomes
richer and richer. However, a much larger group is those without Hukou, migrating to
Shenzhen to look for a job and work in private companies, factories or small workshops.
Many of them are from rural areas outside Shenzhen, but some of them are college
graduate professionals and they do not have Hukou but have good income. Some
migrants obtain household registration in Shenzhen after they have worked in Shenzhen
for some years, but some migrants cannot obtain household registration in Shenzhen yet.
Those people who don’t have Shenzhen Hukou have limited access to some special
governmental resources and social welfare services which are provided by the Shenzhen
87
government, such as free ART and related medical tests and checkups, “low-cost housing”
and job opportunities. Since they do not have Shenzhen Hukou and are not regarded as a
citizen of Shenzhen city, they are generally regarded as outsiders and working labourers
only. The population in Shenzhen is very diverse, with people from all parts of China.
In recent years, great efforts have been made to reform the household registration
(Hukou) system, which has been regarded as the central mechanism underlying the
unsettled nature of the floating population (Zhu, 2007). The boundary of the Hukou system
has been criticized in that it discriminates against people without a local Hukou when
looking for a job, attending schools or accessing social welfare and health care resources,
and therefore results in further enlarging rural-urban disparities, restricting city
development, creating conflicts, and destroying social stability (Lin & Wu, 2010; Yu & Ding,
2010; Zhao, 2009).
Shenzhen, as a young and energetic window city in China, is trying to address the
problem of the Huko system and related issues. According to the Shenzhen City
Government General Office Notice of Proposed Regulations on Migrant worker
integral-based Household Registration (Shenzhen City Government General Office, 2011),
the inclusion criteria of Shenzhen Hukou have been changed, and migrant workers are
accepted on an integral basis. For example, those migrant workers or labourers working in
the public transportation system and city hygiene system can be accepted as Shenzhen
Hukou when they have enough accumulated points. When an informant told me about this
example, I could tell that he was excited about this news. This informant said that he
wanted to have a Shenzhen Hukou. The Shenzhen government is trying to present a more
responsible and open image. A huge slogan of “lai le jiu shi Shenzhen ren (来了就是深圳人
you become Shenzhen people just after you arrive)” is presented on a large screen at the
88
front gate of Shenzhen railway station. It demonstrates that Shenzhen is open to everyone
who would like to pursue their Shenzhen dream. In terms of social welfare, the Shenzhen
government regulates social and medical insurance. Every company is required to join a
social and medical insurance scheme. But in practice, there are some differences in
different companies and factories.
A tough migrant life
However, the life of migrant workers is difficult with long working hours, low incomes
and lack of social and psychological support. In the year of 2010, 12 migrant workers in
FOXCONN jumped, with ten deaths and two seriously injured in Shenzhen. This series of
jumping directed public concern for the lives of migrant workers. Among these suicides,
there were youths aged from 18-24. Their life stresses are very great: living costs are
increasing, and housing is becoming more and more expensive. As Emile Durkheim (1897
as cited in Bearman, 1991) explained in Le Suicid, when the relations between individuals,
social groups and the whole of society are blocked or broken up, suicide is likely. The
suicides in FOXCONN indicated that these migrant workers were isolated and alienated
from their social circumstances and they lacked social and psychological support. A
respondent made the comment that “the jumping in FOXCONN is an example. It is so
stressful. The line operation in factories is a machine indeed, and the work time is counted
in minutes. It has been designed that in a certain number of minutes you need to clip
certain screws, or you need to finish certain welding spots…if you do not finish your part of
the work, the later parts in the line have to be stopped…you are always hastened, and you
have to continuously and desperately work and work. In this way, humans become
machines.”
89
Another respondent who earned a median income rented a single room in Guan
Wai (关外 outside the special economic zoon) which cost a third of his monthly income.
Living in Guan Wai is cheaper compared to renting a single apartment in Guan Nei (关内
inside the special economic zone). But transportation is a big headache. When I lived with
my key informants in Guan Wai, I tried to take a bus to Guan Nei in the morning. I tried my
best to squeeze onto a crowded bus but I failed. I only successfully squeezed onto the
third bus. But getting onto a crowded bus was just the first hurdle and heavy traffic jam was
the next. It took me one and a half hours to get to my destination, which was just 30
minutes outside peak times. During my fieldwork, I witnessed people’s irritation on the
buses, complaining about the bus service, arguing with the bus driver or arguing with other
passengers, and I became emotional as well when I had to use public transportation at
peak times. In Hua Qiang road, I witnessed crowded and angry passengers blocking the
road as they had been waiting for a long time and buses were always overloaded, and it
was about 8:30 at night.
High frequency of moving is another characteristic of a migrant society like
Shenzhen. A highly floating society increases its vitality and energy on one hand, and
creates uncertainty and instability on the other. Many MSM in Shenzhen move from city to
city, causing them serious financial cost, uncertainty and continuous adjustment problems.
Some of our respondents had been ‘floating’ across different cities (e.g. Beijing, Tianjian
Shenyang, Changchun, Chengdu, Chongqing and Guangzhou). They often live in
economic hardship and utilize their family and social networks, including those of the
tongzhi peers to look for jobs and housing.
90
Geo-network
In a migrant population, a geo-network is usually influential in building up social
capital. It can be seen that people migrating from the same place, so-called lao xiang (老乡
fellow townsman), are usually more friendly and more enthusiastic toward each other. A
Chinese phrase, ‘lao xiang jian lao xiang, liang yan lei wang wang’ (老乡见老乡，两眼泪汪
汪 when fellow townsmen meet, tears weep in their eyes), tells that migrants make a life
far away from their hometown, and an encounter with a fellow townsman will stimulate
their emotions, such as missing home, and therefore generates a feeling of families. In
Chinese society, a geo-network is an influential factor that shapes migrants’ social network.
Lao xiang can stimulate trust and reciprocity, and build up social networks comparatively
easily. In the current study, some respondents obtained significant social and
psychological support from “lao xiang”.
Openness in Shenzhen
Most of the respondents felt positive about Shenzhen, finding it a bustling, modern
city which is more tolerant to homosexuality. Jiang, a well-educated respondent, said that
“Shenzhen is more tolerant, after all the migrants significantly occupy the major population
in Shenzhen, and many are young. On the one hand I do not feel marginalized; one the
other hand, I feel the people here are more straightforward in getting along with each other,
and more open.” Zhou was not well-educated, but he also shared a similar impression that
“Shenzhen is good, no discrimination to non-local people, after all it is a migrant city…I
don’t feel discrimination. If you have capability, courage, insight, and opportunities, you can
reach your dreams and objectives…Shenzhen is like my new home, more appropriate for
my living. It is possible that Shenzhen is my real home, and I will live here until I die.” You,
91
another respondent, said, “in Shenzhen, we are all from every part of China, and we work
here and live here, no one would push you out. At this point, Shenzhen is more inclusive
and we as non-local labourers have a feeling of belonging.” Hua, a migrant labourer
working in a construction company, said that “in Shenzhen, you can go everywhere for fun,
you can do everything you want to do, it is convenient.” Being new, young, energetic and
diverse are perceived as the characteristics of Shenzhen city. In my fieldwork, I took a taxi
and discussed with the driver whether he had heard about tongxinglian (homosexuals) and
what he felt about it. He said, “Actually, there is nothing surprising or to fear in Shenzhen. It
has been broadcast on the radio and TV, so it is not surprising.”
Migration as a way of identity exploration
It has become easier to move around and that has caused people to migrate not
only for economic reasons, but also for reasons of identity; non-economic factors, such as
cultural status and identity, are increasingly significant (van Meijl, 2008). In the current
study, some respondents expressed their view that moving to Shenzhen was not just for
earning money, but also for exploring their sexual freedom as tongzhi/tongxinglian. Fan
was a typical case. He suffered a lot in his hometown in northeast China, since he was
quite feminine and found difficulty in attaining the social expectation of strong masculinity
in northeast China. He said, “I feel Shenzhen is quite good in this aspect (masculinity). In
Guangdong, general men are also quite ‘niang’ (娘的 feminine)…I feel this place is quite
suitable for me…We are all feminine, hehe (laughs slightly).” He went to have cosmetic
surgery in order to be better-looking. He explained that “I have no choice. My purpose is
very simple. I just want to stay for several more years in Shenzhen. In a place like
Shenzhen, as a tongzhi, you need to be good-looking, or rich. …I feel the night-life here is
suitable for me. I like this vibrant life. …I am different from normal people. …I like the
92
feeling of existing alone because no one knows about me.” You, Xu and Zhou shared
similar experiences with Fan, and all of them would like to live in Shenzhen. This is in line
with Kong’s (2011) study that being gay is a kind of liberation and a ‘fun’ way of being
human; and the state and the market exercised power in both liberalizing and restricting
the development of gay spaces. Shenzhen is such a typical place where the power of state
and the power of market interact to form a more tolerant but stressful space for MSM.
3.4 Shenzhen Culture
A window culture
The story of Shenzhen is the story of Spring when Deng Xiaoping made a
far-reaching decision in China’s history to set up the Shenzhen Special Economic Zone.
Shenzhen culture is a window culture (窗口文化), which focuses on presenting its
achievement of richness, xianjin (先进 advancement) and wenming (文明 civilization),
talking about “speed is money, efficiency is life”, and highlighting changing old ideologies
and creating new lifestyles. The Shenzhen dream is a dream of having total freedom, both
ideologically and physically, to obtain freedom, to fulfil your own desires, and to present
your capability in your own way. The buffalo statue at the front gate of Shenzhen
government demonstrates that Shenzhen people have a spirit of buffalo, diligent, brave,
insistent and curious. Deng Xiaoping, who is called warmly as Xiaoping tongzhi in
Shenzhen, is a core icon in Shenzhen. A huge Deng Xiaoping statue is located in Lian Hua
Shan Park, and behind the statue, it is written “The experiences in Shenzhen justify that
our reforming and opening policy is correct”, which highlights the core themes of reform
and openness. Hong Kong is regarded as a big brother, while Shenzhen is the little brother.
The culture in Shenzhen is highly influenced by Hong Kong culture, which is imagined as
93
open, free, equal, sophisticated and gao su zhi (高素质 high calibre / high quality of desire).
This imagination provides an assumptive ideal life model for many migrants, and exercises
as an internal power to push them to pursue their Shenzhen dreams.
Cultures of charity and volunteerism
Charity and volunteerism is other important cultures in Shenzhen. The Shenzhen
government has promoted volunteerism tremendously and volunteers take part in many
aspects of social life, especially charities. The public welfare project originality contest is a
typical programme that presents the Shenzhen government as working closely with
charitable individuals, communities, societies, enterprises, and trades to promote the
development of common wealth, and charitable facilities and enterprises. This programme
highlights “public welfare produces harmony, and charity is productivity”. In 2010, the 30th
anniversary of the Shenzhen Special Economic Zone, the theme of the second contest
was “Thanksgiving Shenzhen” and presented its effort in enabling every Shenzhen citizen
to share in the outstanding achievement of its 30 years of opening and reforming. For
example, all people who have a Shenzhen Hukou or Temporary Residence Permit in
Shenzhen received RMB100 (USD15.73) as a gift in their mobile phone fee.
Taking part in volunteer services against HIV transmission is demonstrated as a
meaningful common wealth and charity social issue. In the media, famous actors and
actresses take on the role of AIDS Ambassador, such as Pu Chunxi, Jiang Wenli, and
Peng Liyuan, who advertised that everyone has the responsibility to control HIV/AIDS
transmission and reduce stigma and discrimination against PLWH. Some were Hong Kong
stars, such as Miriam Yeung and Daniel Wu, and their posters against stigma and
discrimination were posted in Shenzhen.
94
In the first “Shenzhen public welfare project originality TV selection contest” in 2009,
which was organized by the Department of Civil Services of Shenzhen Government and
the Shenzhen Radio Film and Television Group, 207 projects took part in the competition,
and some of them worked for PLWH. The SRW submitted its project named “STD
prevention and HIV/AIDS health education and behavioural intervention among Shenzhen
men who have sex with men”, and it was awarded the top 50 projects. This was the first
time in China that a health education and intervention project among the MSM population
was selected by the media and was promoted as a daily public welfare activity. The leader
of the SRW said that when he gave a speech on the contest, the audience gave him
rapturous applause and this project captured the attention of government leaders and
related exports. Later, it was posted on the SRW website that “through this TV selection
contest, we can see that Shenzhen society tolerates and understands the MSM population.
We expect more and more sympathetic persons or enterprises to join us, and at the same
time we hope more and more friends to vote for us.” This event shows that the discourse of
public welfare and charity can be utilized to expand social space for the MSM population in
Shenzhen. And it therefore empowers MSM to actively join in their communities and take
part in volunteer activities.
A culture of Consumerism
Consumerism is another cultural characteristic of Shenzhen. Consumerism
describes a society in which many people formulate their goals in life partly through
acquiring goods that they clearly do not need for subsistence or for traditional display
(Stearns, 2001). A respondent said, “To be gay is a kind of fashion.” He was just 18 years
old, and did not feel any problem about being a MB. He said, “At that time it seemed
glorious to be a MB. The previous night before I worked as a MB, I posted openly on qq
95
groups that tomorrow was my first day as a MB and asked who would like to take me…
and I thought I could buy candy after serving my first client.” He further talked about his
story, “he (his first client) was a gege (哥哥 brother) from Bao An. I was very lucky, he was
a ‘fu er dai’ (富二代 the second generation of richer), aged 22, and good looking…That
night, he drove me to a hotel and we had sex, and then he drove me to a bar to have fun.
When he left, he gave me RMB200. That was my first order, and was very unforgettable. I
suddenly felt I had drink, fun, money, and didn’t need to pay, and a lot of handsome boys
were there...I felt attracted by it.” Another MB, aged 20, also shared similar feelings of
being a MB, and he liked the easy and quick money, trendy clothes, and fashionable
hairstyles and trinkets. He said, “In the circle of MB, 20% of them are forced by survival,
while for 80% of them it is just for keeping up with the joneses or motivated by vanity.”
The ideology of consumerism is not only intensively presented among MB, but also
presented among general MSM in Shenzhen. They were generally well dressed and had
trendy haircuts. In order to be attractive, one needs to be fashionable. They consumed to
be gay/tongzhi. They became enmeshed in the process of acquisition – shopping – and
took some of their identity of being a gay/tongzhi from a procession of new items that they
bought and exhibited. NT is a huge shopping centre in Shenzhen, which is regarded as a
fashion centre for gays and tongzhi. A lot of shops selling fashion clothes, shoes, hats and
trinkets are located there. Several of my informants and respondents brought with me
there and they told me that some of these shops were managed by tongzhi/gays, and I
saw that they were excited to see how other tongzhi/gays dressed. It has been argued that
“Consumerism is so closely associated with an almost fantasy-like modernity; strong
individualist in consumerism is striking, as against more group-oriented traditions; and
therefore consumerism provide a larger release from customary hierarchness and
constraints” (Stearns, 2001:99). In this regard, consumerism may also provide spaces for
96
tongzhi/gays to obtain freedom socially and spiritually, such as exploring their sexual
identity.
Mixed and diverse cultures
The culture of a migrant city like Shenzhen actually embraces mixed and diverse
cultures. You can find any kind of restaurant from every part of China in Shenzhen. The
people you get along with are from every part of China. Just like a phrase “luo bo qing cai,
ge you suo ai (萝卜青菜，各有所爱 radish and greengrocery, all have their own lovers)”,
differences among people are normal and apparent. In my fieldwork, people generally
described their differences in more plain and neutral words, such as “I like spicy food, while
he doesn’t like it”.
Shenzhen was the first special economic zone in China, and is presented as a
dreamy gold destination, attracting millions of migrants from every part of China. Some are
well-educated, while many are not. But most of them share a similarity which is the hope to
build up their future, to have a comfortable life, to fulfil their dreams, such as obtaining their
own houses or cars. Everyone working in Shenzhen has their own Shenzhen Dream.
A high focus of pursuing fortune creates a culture of “ren qian bu ren ren” (认钱不认
人 recognizing money instead of the person). In highly competitive circumstances,
opportunities and risk co-exist, and people keep a certain distance and are defensive. A
result is that people generally perceive loneliness, emptiness, lack of communication and
larger social distance. In my fieldwork, I visited some tongzhi bars, and a dancer in BD Bar
said ‘we bet on bears; actually we bet on loneliness’.
97
3.5 MSM community and tongzhi subculture
The tongzhi business and its role in MSM communities
Tongzhi business in Shenzhen has been growing as a strong power for MSM
community development. The collaborations between tongzhi business venues or
enterprises, MSM community-based organizations and health care institutes have been
developing as well. DM, a traditional business centre in Shenzhen, is usually crowded with
thousands of people. I occasionally saw several pairs of fashionable young men walking
around hand in hand and openly showing their intimate relationship. Since gay men
generally pay more attention to fashion, they manage shops in DM, selling clothing,
necklaces, make-up, jewellery, trinkets, and so on, or open beauty salons, or foot massage
salons.
As mentioned above there were more than 60 MSM entertainment venues, such as
bars, saunas and clubs. And many venues had special characteristics. Some targeted
middle to old aged MSM; some targeted bears (big and fat MSM); some targeted middle
class MSM, and some targeted youth MSM. Some of them collaborated. For example, X
sauna collaborated with C bar, and when clients consumed in X bar and then went to X
sauna overnight, they would be provided a discount. Both of X sauna and C bar were
popular in the MSM communities in Shenzhen.
Another example is a tongzhi tour company working together with the SRW, Z bar
and B bar to promote its tour services to Thailand. The SRW organized the activities, bars
provided venues and the tour company provided free tour packages. They co-organized
“Dating the Rainbow”, which was advertised as the first programme of its kind of real single
98
tongzhi “chao nan (潮男 trendy man)” interaction and friend making show. Even though it
was not broadcast on TV, this programme was still a hot activity in the Shenzhen MSM
communities. Every month the programme was shown once and dozens of tongzhi
participated. Every three months, a participant would be selected through a lucky draw and
would be provided a totally free tour package to Thailand. The SRW tried to utilize
commercial resources to build up a healthy and active tongzhi culture in Shenzhen, and in
these activities, the SRW did not earn profit.
When a new sauna began its business, its boss went to the SRW office and talked
to the leader to set up funding to support the tongzhi community. Their proposed plan was
to donate a small part of their turnover to the SRW to set up a “Rainbow Fund”. Even
though this boss had his own business strategy to open a door to get into the MSM
communities, this event indicated that the good development of tongzhi business/the pink
industry made fundraising within local MSM communities possible. It was more than an
issue of money; more importantly, it presented a growing community belonging and
collective identity among the MSM population. It went a step further compared with an
ethnographic study in a sister city—Guangzhou which described a growing collective
tongzhi identity in some MSM groups (Li, Holroyd, & Lau, 2010).
T club was another venue working closely with the SRW. With help from the SRW, T
club obtained a sum of funding to upgrade its facilities. Their common interest was to
upgrade T club to be a comprehensive tongzhi centre, providing a gym, swimming pool,
sports and other entertainments, and therefore weakened its dependence on sauna
services. It closely matched the objective of the SRW, “promoting a healthy life style,
advancing and enriching tongzhi culture”. It was the aim for the SRW to try to drive MSM
communities in a more healthy direction.
99
Through the above elaboration, it is clear that the SRW, a local community-based
grassroots organization, played a significant role in the development of local MSM
communities. As the leader of the SRW said, within MSM communities, the SRW acted as
a matchmaker and liaison, and bridged government and the communities, facilitating
different MSM venues, enterprises or groups to work together.
On 20 November 2009, the SRW, Shenzhen Deafmute Art Group, Q Bar, SZJY.cc
organized a charity party—love and care for deaf mutes. This party highlighted “love”,
calling people to devote their self-giving love to people in need and to care about the
people around us. All of the funds raised in the charity auction were donated to the
Shenzhen Deafmute Association. On 27 August 2010, the SRW, SZJY.cc, BR Tour and Z
Bar organized a “Celebrating 30th Anniversary of Shenzhen Special Economic
Zone—Shenzhen Tongzhi Full-Length Theatrical Performance”. More than a hundred
tongzhi attended the party that night. This party integrated Shenzhen tongzhi development
into 30 years of reforming and opening Shenzhen Special Economic Zone, and presented
tongzhi pride in that Shenzhen tongzhi led the development of tongzhi culture in mainland
China and inclusively embraced homosexuals coming from every part of China. Increasing
the interaction and familiarity of different venues and organizations was also another
objective of this party. As the leader of the SRW said, “the SRW is a brand in Shenzhen
MSM communities”. He realized that business benefit is a priority for these MSM venues
and enterprises and the key is to balance their needs and the objectives of the SRW, so
that they can push the development of the community.
The good rapport building between the SRW and its partners facilitated HIV/AIDS
research, prevention and intervention. A benignant mutual promotion of government
HIV/AIDS prevention, economic benefits of MSM venues and enterprises, and leadership
100
of the SRW in Shenzhen MSM communities are therefore well addressed. This in turn
provides more social spaces for MSM in Shenzhen to explore their sexual interest, and
facilitates identity formation of being a homosexual, bisexual, tongzhi, or gay, and therefore
releases their stress and develops better self-esteem and confidence.
Cyberspace and the forming of an MSM community
Cyberspace also plays a significant role in MSM community formation, such as
tongzhi websites, QQ groups, blogs and personal QQ spaces. Through cyberspace,
tongzhi news, opinions and arguments, health information (e.g. HIV/AIDS, STDs, and
sexual health), business information (e.g. job hunting and recruiting, housing and rental,
and advertising), food and entertainments (e.g. movies, music, videos and photos), tongzhi
arts, friend making, as well as transactional sex, can be publicized. Cyber communities are
therefore formulated, and a feeling of social belonging to a group of people who share
similarities is also generated. This is an important psychological support among the MSM
population, which is helpful in releasing their loneliness and emptiness.
The website of SZJY.cc, a local tongzhi website, was one of the important cyber
spaces in the MSM communities. Many advertisements sponsored by MSM entertainment
venues or enterprises were posted on this website. It has been developing into an
important tongzhi media among MSM communities in Shenzhen. It was also an important
collaborator of the SRW. Moreover, this website was the biggest tongzhi website in
Shenzhen and provided specific cyberspace for HIV positive MSM to express their
emotions or experiences, to exchange information, or to seek help.
From cyberspace to real daily life, MSM communities have collected and been
101
formulated. MSM in Shenzhen can look for housemates or roommates by posting their
notices online. They can look for a job through the network of MSM peers. They can join
physical, recreational or entertainment activities with their MSM peers. To set up a qq
group is easy, and everyone can apply to set up a qq group and to be a manager of this
group. Xiyao, one of the informants, set up a qq group and organized outdoor activities.
His group and the SRW organized a tour to visit an island, and I joined this activity. We
reached an island by boat and set up our camp, and then we swam in the sea, played
volleyball or caught crabs. After sunset, we had a BBQ and then played games. I saw that
some HIV positive MSM also joined this activity, and they enjoyed it. The sense of social
belonging to this group would become stronger.
MSM-related CBOs and NGOs
MSM-related CBOs and NGOs are developed in the backdrop of HIV/AIDS
campaigns, such as the SRW, XY, CH Shenzhen Volunteer Group, HPG, SA, etc. These
CBOs and NGOs are still underdeveloped. As a major volunteer organization working in
HIV/AIDS prevention and intervention among the MSM population, the SRW presented its
leadership in MSM communities in Shenzhen. Under the support of the SRW, another
grassroots group—GA Group was set up, which specifically serves female and male sex
workers and Money Boys (MB).
Something tricky however existed there, such as the relations between NOGs and
grassroots groups. CH was a Hong Kong-based NGO working in Shenzhen MSM. CH
volunteers conducted outreach activities on a small scale; firstly they organized single
tongzhi friend-making parties, tongzhi issues debate contests and other outdoor activities.
The SRW was also interested in the single tongzhi friend making party and tried to
102
negotiate with CH to hold this party together as a kind of cooperation. But CH did not
accept that, and then the SRW and other venues organized a new single tongzhi friend
making party, named “Dating the Rainbow”. XY was another NGO working in Shenzhen,
which obtained funding from Hong Kong. But XY and the SRW had different ideas for rapid
HIV testing. And it generated some gossip later.
NGOs or grassroots organizations in Shenzhen have many connections with Hong
Kong NGOs and organizations. For example, the SRW worked with the Hong Kong AIDS
Foundation and Choices on several projects; XY worked with Midnight Blue, a Hong Kong
NGO, on MB projects; Lions Clubs International District 303 provided funding to support
staff and volunteers from mainland China to attend workshops and training in Hong Kong,
and several volunteers in the SRW have been funded and trained in Hong Kong.
The MSM communities in Shenzhen were also connected with its sister
city—Guangzhou. Guangzhou Tongzhi’s Families and Friends Association was another
grassroots organization that closely influenced the Shenzhen MSM community. “Tongzhi
Mother”—Wu Youjian—the first mother in China who spoke out in the media to support her
son being a tongzhi (homosexual) visited Shenzhen in May 2009, and local MSM
communities conducted a Mother’s Day Party to welcome her and other visitors, and later
an open discussion was conducted. These activities were online broadcast on-the-spot in
SZJY.cc and created resonance among Shenzhen MSM communities. Many of my
informants felt encouraged and gratified.
Norms and interests presented in MSM communities
It is a general phenomenon that MSM in Shenzhen widely use their “wang ming” (网
103
名 feign name used on the internet) online or in real social activities among MSM circles. It
is a norm that does not ask about others’ real name, home address or company address in
this circle. They generally keep a certain social distance. But after becoming familiar with
each other, they may know more about each other, and it is case specific.
According to informants and respondents, major interests in their daily talk or online
chatting were about fashion (clothes, trinkets and hairstyles), fun (entertainment and fun of
having sex), and “shuai ge” (帅哥 handsome men).
An obvious feature they presented was being fashionable. Generally in tongzhi
parties or gatherings, participants dress the best. I witnessed one of my informants being
criticized by his boyfriend that the black and white fabric shoes he was wearing was very
‘lei ren’ (雷人 shocked by his lack of style), and then his boyfriend urged him to change his
shoes before hanging out. I was criticized by my tongzhi informants because of my
outdated look of ‘zhi qing’ (知青 educated youth, a specific term used in the Mao’s era,
here meaning lack of style). After I had a fashionable hairstyle and wore trendy clothes, I
was more accepted. Another respondent—Hei—shared a similar experience. He was
criticized by a “wang you” (网友 internet friend): “why do you dress like a peasant”, when
they met. And then this was their first and last meeting.
To have fun is another feature among MSM circles. The search for sexual fun is
strongly presented in qq groups and on tongzhi websites. It was not surprising that
someone posted directly in qq groups to look for sex partners. Here is an example
captured in a tongzhi qq group:
2 June 2010 XX QQ Group 1:30 AM
HAN (86*******)
10:31:11 AM
104
有 0 吗 [Is there any “o” (the one who perform being penetrated in having sex)?]
HAN (86*******)
10:31:13 AM
现在做 [to do it (have sex) right now ]
WZ<w*******@qq.com>
10:31:42 AM
什么情况？[what is your condition?]
HAN (86*******)
10:31:59 AM
私聊我啊 [chat with me in private]
WZ<w*******@qq.com>
10:32:03 AM
情况？[condition?]
HAN (86*******)
10:32:31 AM
30,176,70 [I am aged 30, 176 cm tall, and weight 70 kilograms]
WZ<w*******@qq.com>
10:32:35 AM
额 [okay]
Feng expressed his disappointment with the change of communication pattern of qq
groups. He said, “previously people would chat with you or phone you later, or sometimes,
for example on weekends, play cards. But now it is not like that. It’s all about ‘qing kuang’
(情况 conditions, such as age, height and weight), and then asked for 1/0, okay, no more
topics to talk about. It’s so simple nowadays. It is extremely boring!”
Several respondents
and informants shared this observation and feeling.
Internet provides cyberspace for MSM connection, but their communication pattern
has become more and more superficial and simplified. It indicates that the social distance,
spiritually, if not physically, is becoming larger and larger among the MSM population. This
is an important reason why so many respondents and informants mentioned that it was
very difficult to look for real love or a real friend/boyfriend. The MSM online subculture has
become more focused on having sex.
“Shuai Ge” (帅哥 handsome men) is always a hot topic among MSM. I generally
encountered a circumstance in my fieldwork that a MSM excitedly talked to another MSM
about when and where he met with or saw a handsome man. Even in the in-depth
105
interviews, some respondents complained that their boyfriends always liked to catch
handsome men. Qin said, “when I hang out with him (his boyfriend), if there was a ‘shuai
ge’ coming face-to-face, he would deliberately head to him and pass by shoulder to
shoulder with this handsome man. I got very angry every time he did that.” During my
fieldwork, some informants were also very excited to tell me how handsome a man they
met had been when they were on a bus or waiting for a bus. The leader of the SRW
mentioned that a strategy he used to promote condoms and safer sex was to recruit “shuai
ge” and “liang zai” (靓仔 beautiful boys) as volunteers to communicate with and advertise
to the potential MSM audience. Actually the enthusiasm for “shuai ge” and “liang zai” is an
expression of pursuing fashion and freshness, a representation of consumerism in men’s
bodies.
Hierarchy in MSM communities
Hierarchy is also obviously presented in MSM communities in Shenzhen. In my
fieldwork, an informant—Ping—expressed proudly that he lived in Guan Nei, even though
he just rented this apartment and shared it financially with two housemates. In his words, I
could tell he felt something privileged in relation to those who live in Guan Wai. He also
presented himself as a Singaporean in his qq and daily communication to attract young
and handsome men. He also showed off his college education and good incomes. In my
interaction and communication with him later on, he made up a list stories that his parents
were doing big businesses in China. But later I found he was actually a migrant from
northern rural China. Ping was a typical case to show the ideology and practices of
hierarchy among MSM in Shenzhen: rich vs. poor, handsome vs. ugly, You xiu (优秀
excellent) vs. mei su zhi (没素质 low quality/ poor distinction), well-educated vs. low
educated, Guan nei vs. guan wai, rural vs. urban. Another respondent, Jin, used himself as
106
an example to elaborate a principle in MSM circles that rich and handsome are two keys to
look for partners, and a man who is neither rich nor handsome finds it very difficult to look
for a boyfriend or real love. He said, “The rich and older men like the young men, while the
young men like the richer ones. Those men who are not young and have no money, like
me, cannot look for someone.” However, in my eyes, he is not bad, since his look was
good. He was college educated, and had a stable job and income. But he did experience
failure several times in his love affairs with men. Later, some respondents also expressed
similar views about MSM circles in the in-depth interviews.
Economic factors are crucial in MSM communities in Shenzhen. Those MSM who
have low incomes have less opportunity to join the communities, and are therefore more
hard-to-reach. For example, those MSM working in small workshops in Guan Wai (关外
outside the special economic zone) were less visible in the Guan Nei (关内 inside the
special economic zone) MSM venues. Peng, one of my respondents, belonged to these
more marginalized MSM and he never visited tongzhi bars or saunas and even did not use
the internet. He just cruised public toilets or parks to look for partners. The leader and
volunteers in the SRW also acknowledged that they have less networking in Guan Wai,
especially in the remote towns. This can be testified to by Xu, another respondent of mine,
who worked and lived in a town close to the border between Shenzhen and Huizhou. I
visited him twice. I firstly took the bus from central Shenzhen to LG district in Guan Wai,
and then transferred to another bus to his town. In total, a single trip took about 3 to 4
hours. The circumstances he lived in were actually a low technological industry park
located in a rural area, which lacked recreational facilities and entertainment services. I
went with Xu to visit a local park where some MSM would visit to look for partners.
In my fieldwork, I saw that those volunteers who continuously took part in SRW
107
volunteer work were those who had comparatively stable jobs and incomes, and they
usually worked in Guan Nei. I met with some migrant workers working in Guan Wai earning
lower incomes and they wanted to join the SRW as well at the beginning. But later on, they
gradually participated in activities less and less, and then disappeared. It indicated that
those migrant workers of lower social and economic status had fewer chances to integrate
into local volunteer groups. The reasons included that they had less free time to participate;
they had less economic capability to participate since volunteers usually needed to pay for
their own expenses in the course of volunteer work; and they might also find it difficult to
integrate into the circle of comparatively well-educated and higher income volunteers.
Discourse of “love” and “filial piety”
Mainstream moral values are still strong discourses in MSM communities. They
used the discourse of love to negotiate and justify their same sex relationships. Several
informants gave a common argument that “if you don’t really love a woman and get
married to her, you will hurt this woman.” The leader of the SRW mentioned that the SRW
encouraged volunteers and other MSM set up long-term relationships. I met several
couples among volunteers; some of whom had maintained their relationships for several
years. And these couples were in monogamous relationships and self-reported infidelity.
Sometimes, I heard some gossip about who has or had many partners and usually it was
followed with negative moral judgments and attitudes to the behaviour of multiple sex
partners. However, in practice, many respondents and informants acknowledged that
many MSM had multiple partners. One night stands are common in MSM communities and
looking for handsome and fresh men is a strong interest for many MSM.
Many MSM go back to heterosexual marriages when they are older, in their late 20s
108
to mid-30s. At that time, a traditional discourse of filial piety and family obligation of having
children to continue their family bloodline is utilized to negotiate and justify their marriages
to women they do not really love. Or they attributed their heterosexual marriages to being
hurt and disappointment in MSM circles, and therefore they lost their confidence in same
sex relationships and worried about their lives when they are old.
Tao was a typical case and he described his view that “previously I felt marriage
(with women) is a fault, but now I think it is right…previously it was for hiding myself, to
avoid…because of marriage, at least relatives and friends would look at you as
normal…because of this reason I got married to my wife, but I was unwilling to do so. It
was just to hide something. But now I feel, after marriage we have a child and our child
brings us a lot of happiness. Moreover, I can see a family, to have a family. Even though I
still hesitate to touch my wife’s body, I do not refuse as much as before. Now I feel natural
to touch her body, very natural…Therefore, I think it is better to have a family. It is right to
get married.”
Rhetoric and reality around MSM communities
Informants and respondents generally presented negative comments and attitudes
to the MSM communities.
“Luan”, dirty, ruined and painful
Many respondents described MSM circles as “luan”(乱 messy), dirty, promiscuous,
and they experienced loneliness, emptiness, hurt and pain in these circles. Some
respondents were disgusted by these MSM circles. When same sex relationships are not
109
accepted in Chinese culture and not protected by the law in China, these men have to
practise their homosexuality in darkness, just as Chen summarized that “zai hei an zhong
si yi sheng zhang
(在黑暗中肆意生长 growing up wantonly in darkness)”.
Zhou was a typical case and he described very negative comments that “if there are
too many tongzhi, it will be awfully serious and this society will be ruined…firstly ‘feng qi’
(风气 ethos and common practices) is not good. I don’t like this circle from the bottom of
my heart. I have no way, and I want to change but I can’t. But I don’t want others to sink
into this circle. It will ruin them…Even though two persons really love each other, they
cannot stay together. This feeling is very painful. I experienced that…Chinese society does
not recognize it, even though you find someone, so what! It is still very painful, and it is still
behind closed doors! Very painful!...It’s better to look for a normal, to look for a girl, to love
each other and be kind to each other. …This circle is really, very ‘dirty’. Those men can
immediately make love just in a meet, just like animals. I feel tongzhi sometimes is not
different from animals, totally just for physical needs, just sex. I actually want to withdraw
from it, but I feel it very difficult to do so.” Xie also used his own experiences to draw a
negative
picture
of
tongzhi
circles
that
“tongzhi
are
all
‘hua
xin’
( 花 心
playful/promiscuous)…Only few really maintain long-term relationships…I feel tongzhi
circles are really very ‘luan’ …many 419 (one night stand)…especially those in the Internet
are very ‘luan’…in XX sauna, four men ‘qun pi’ (群劈 have group sex)”.
It can be seen that lack of social acceptance and legal recognition creates a big
obstacle for tongzhi/MSM to build up stable relationships. It makes them feel hurt and
disappointed, and regard themselves as abnormal. In turn, it also pushes tongzhi
subculture to a trend of multiple sex partners and risky sex.
110
Zhou further elaborated, “Why do so many tongzhi look for 419? It’s not because of
love. It’s totally because of a kind of loneliness and emptiness in the body…especially for
those ‘o’…that feeling is really, I can use myself to explain, very empty, very lonely, cannot
see the end of it, want to look for a support/backing man, but as a man, not like women,
who can you look for? They therefore have to look for 419.” Zhou always talked to me that
he really wanted to have a lover, but he also admitted that he had many 419. It seems
contradictory, but it is actually embedded on the tongzhi subculture of sex and love. Qian
provided the explanation that “actually they are looking for boyfriends, and always want to
look for a lover. But it’s because they cannot look for a lover for a long time, it becomes a
kind of giving vent to their carnal desire, and then gradually becomes a habit. Even though
they cannot look for a lover, it’s still for fun. That’s a kind of psychological need, physical
need.” In this regard, 419 and promiscuity are embedded on the difficulty of looking for
lovers among MSM circles, since it is prohibited by our mainstream social norms and
cultural values.
Lack of love/affection in tongzhi circles
Many tongzhi want to look for a lover, but many of them fail to do so. Instead,
multiple sex partners are quite popular. Gradually, it has become a common experience
that there is no love/affection in tongzhi circles. Lack of role models is a serious issue. After
a long time looking for lovers, but the result is getting hurt and contracting diseases,
negative attitudes and denial against tongzhi circles come out. Money and sex seem to be
two major topics in tongzhi circles, which make love/affection very fragile. The following
are four typical expressions from respondents.
Zhang said, “In gay circles, no affection/love can last long. Maybe you can have it,
111
but it’s not real. Say two men live together for several decades, is it possible? Yes,
but there are very few cases. They might have love affairs or external sex with
someone else. When you are on a business trip, you may look for boys outside.
It’s impossible to be faithful for one’s whole life for a single person.”
Jin said, “In Shenzhen, gays are very fickle and blundering in the city…I have
come to Shenzhen for many years, I don’t obtain my love, I don’t perform very well
in my work, instead I get infected with so many diseases. It’s over! Gradually I am
disgusted with this circle.” He further criticized, “Often someone said gays are very
kind, but I do not agree with this statement…many gays are not kind or benevolent
at all. …People are not as pure as before, and have higher desires for materials.”
Kong said, “For sex, everyone can be betrayed. Tongzhi affection is very fragile
when encountering money and sex, especially in Shenzhen. Looking for
boyfriends is looking for a rich one, who can raise you, and you don’t need to work,
and you can have a rich life, and you can play cheesy. …After I encountered these
things, I don’t believe this so-called affection anymore. I would do something, such
as not use condoms or other things at sixes and sevens. Many things would be
easier to happen then.”
Shen even directly described his feeling that “In this circle, who will set up affection
with you? Very difficult! I feel it’s ridiculous to talk about affection.”
“Superficial and feigned”
Superficial and feigned are other negative comments about gay/tongzhi/MSM
circles from some respondents, especially those who have rich experiences in MB circles.
They can tell the ugliness behind the luxurious look.
Lv said, “Gay circles are very colourful, just like the rainbow, beautiful. But behind
the pretty, there’s always ugliness. I always feel that there are too many superficial
things in gay circles. They just pretend to be high class and gorgeous on the
surface. …I say my life is a kind of rubbish, and I didn’t have any idea about this
gay circle anymore. My heart is broken. I don’t want to get involved in others’
lives.” Another respondent—Wu—said, “In gay circles, you should not be too kind.
When you are too kind, you will be bullied. …vanity is too strong, and too
virtual. …in gay circles, they like to show off, are very jealous. …Actually I don’t
like this circle at all.”
112
Shen said, “People become more and more impure, and have impure
motives. …you don’t know whether he plays with you or you play with him. In this
kind of mentality, there’s an estrangement when you look for boyfriends, bearing a
grudge. And you would not invest your emotions like before. …you watch me and I
watch you, not honest. …no one wants to devote their affections, since both of
them fear being hurt once they devote themselves. …I feel disappointed about this
circle. I don’t have a boyfriend, and I feel very lonely and empty.”
In my fieldwork, when I went together with SRW volunteers and CDC staff to a
tongzhi bar, I met with a young man who also took part in volunteer work. He showed off
his family to me that his family is rich and his father is a high class officer. At that moment, I
was shocked by his introduction. Later, I interviewed Wu who was of a similar age to this
young man. Wu also showed off his rich and powerful family. Later on, after I conducted
participant observation and repeated in-depth interviews with Wu, I then understood that it
is a kind of superficial and feigned presentation in tongzhi subculture, especially in MSM
entertainment venues.
3.6 The subgroup of HIV positive MSM
HIV positive MSM generally develop a closer identity with PLWH than with general
MSM. Many respondents mentioned that they preferred to have collective activities with
PLWH, no matter whether they are MSM or not, and they felt comfortable and relaxed. Hei,
one of the respondents, said, “Many (HIV positive) people say they don’t want to join
activities organized by non-HIV infected persons. Many people (PLWH) say this. It is an
issue of trust, I think. That’s they don’t believe those people who are not HIV positive would
really understand HIV infected persons like us.” The identity of being HIV positive
overrides the identity of being homosexual or heterosexual. Miao said “I suspect before
getting HIV infected normal men might disgust tongzhi…after they get HIV infected they
113
would feel (tongzhi) quite normal…maybe after getting HIV infected they pay little attention
to (sexual orientation), and would not disgust tongzhi.” Qian, another respondent, shared
his experiences that straight men in an HIV positive qq group did not have any
discriminatory look…they had fun together, such as having KTV or dinner together, and
they accepted (tongzhi) and did not present any discrimination. The leader of the SRW
expressed his unhappiness that a leader of an HIV positive group clamoured in front of him
that “non-HIV infected persons should not step into the affairs of HIV positive persons”. For
some HIV positive MSM, especially those taking ART, being HIV positive was a higher
level of identity compared with his identity of being a tongzhi/MSM. It showed that
HIV/AIDS separated the MSM community to a certain degree.
The PLWH community
The circle of HIV positive MSM was smaller than the circle of general MSM, and it
overlapped with the circle of other PLWH. HIV positive MSM formed the first HIV positive
group in Shenzhen, which developed into the HPG later and covered all types of PLWH,
even though MSM were still the majority in this group. The HPG was said originally to be a
branch of the SRW, but now separated from the SRW. The SRW rebuilt an HIV positive
group, but the participants (about 40) were not as much as those in the HPG (more than a
hundred participants). Even though anti-discrimination against PLWH was a strong
discourse in the SRW, volunteers still needed to go through a period of time to totally get
used to working with HIV positive peers. At a dinner party, I saw that fewer volunteers sat
at tables where HIV positive peers were sitting. Those HIV positive volunteers also felt a bit
embarrassed. This provided an angle to see why HIV positive MSM developed a closer
identity with PLWH, instead of their general MSM peers. Qian distinguished the difference
between general MSM groups and HIV positive groups that “general MSM groups just care
114
about sex, while HIV positive groups pay attention to mutual care and support”.
Some respondents joined HIV positive groups, such as the HPG or SA. They went
out socially and joined collective activities, such as KTV, dinner parties, hiking, etc. It has
been reported that some PLWH in the HPG have close contact. For example, a
heterosexual couple of PLWH invited other PLWH in the HPG, some of whom were MSM,
to join a party at their home. Some PLWH were hospitalized, and other peers in the HPG
went to visit them. Just as Miao said, the purpose of setting up the HPG is to promote
mutual care among PLWH, and “when someone gets sick, other peers can take care of
him/her”. Small groups of HIV positive MSM were also organized. Several HIV positive
MSM were friends and had closer connections. For example, Sun, Wang, and Qian were a
group, while Zhao, Feng, and Jin were another group. Small positive friends’ networks
were a form of social connection and support among some HIV positive MSM. They cared
about each other in daily life and chatted and hung out sometimes. These men in small
support groups presented a better adjustment to their HIV diagnosis. However, some
respondents tried to avoid getting into any HIV positive groups, and did not want to be with
HIV positive peers, such as Han and Jian. And some respondents lived with
sero-discordant partners, and showed no interest in contacting HIV positive peers, such as
Jiang.
Norms
Among HIV positive peers, there is a norm of keeping your mouth shut. And they
would not disclose each other. Zhao said, “A couple of days ago, I went to a sauna, I met
with two acquaintances, both of who are ‘A’ (HIV positive). They also went there for
fun…not a bit embarrassed, because he knew I am also ‘A’. When ‘A’ meets with ‘A’, we
115
will not say anything, but we know.” Several respondents witnessed some HIV positive
peers still hanging out to look for sex partners in saunas and they just pretended to not see
each other. Some respondents met with those who practised unprotected sex with them
before they were diagnosed HIV positive in PLWH’s workshops or training. Jin
encountered a man he met before and he said, “When he arrived (in the badminton court),
he looked quite familiar. I was shocked at that moment. I then calmed down. If I met him in
SA (a positive group) before, he must be HIV positive as well. He therefore would not
speak about that (my being HIV positive). I felt no problem then. And we played badminton
and had dinner together. And both of us didn’t mention it.”
Economic barrier
HIV had deteriorated some respondents’ economic hardship. Zheng, one of the
respondents, said that he just took part one or two times in collective activities organized
by HIV positive groups, because these activities needed money and the cost of medical
treatment has deteriorated his basic life. For those HIV positive MSM, it was not a single
phenomenon. Several respondents faced this dilemma that HIV worsened their financial
status and narrowed their social activities and networking. The HPG is a local grassroots
HIV positive group and it organizes activities on an algebraic average basis, such as KTV
and having dinner together in restaurants. At the beginning, dozens of PLWH (the majority
of them were MSM) attended. But latterly, less and less people joined it, and economic
consideration was an important factor. A respondent clearly expressed that this collective
gathering needed money and he therefore reduced his frequency of joining it.
116
3.7 Public health implications
The development of the sex industry and tongzhi business has been increasingly
becoming a strong power pushing the development of MSM communities. Charitable
events, such as charity parties, charity fundraising and volunteer services are appearing
more frequently with larger attendances than in the past. A more connected and networked
MSM community is increasingly visible. Such events indicate the possibility of initiating
more self-help and self-care campaigns and reflective public health education for HIV
transmission within MSM communities.
The popularity of MSM cyberspace, such as tongzhi websites, QQ groups, blogs
and personal space are of importance in contemporary Shenzhen in that they provide a
platform for discussion and debate, such as discussion about the HIV epidemic, among
MSM communities. It is an important condition for enhancing liberal ideology and civil
participation among the MSM population. Such combinations of both advances in formal
service delivery modes and increased utilization of cyberspace suggest the generation of a
collective identity of tongzhi or gays. The implication is that of enhanced self-respect and
self-care within this marginalized and highly vulnerable population. It highlights the
possibility of building up a healthier and more personally and socially responsible tongzhi
subculture.
However, the structural boundary of rural-urban dualism, Hukou barrier, and social
stress from the system of capitalism, political sensitivity and ignorance of gay rights, the
unsophisticated tongzhi subculture, diversity and hierarchy within the MSM community all
emphasize challenges to efficient public health responses to HIV/AIDS.
117
Chapter 4 Health care system and services related to HIV case detection and follow
up
This chapter introduces formal and informal health care related to MSM and HIV in
Shenzhen. The process of taking HIV tests (both screening and diagnostic tests included)
and follow up will be described. Moreover, respondents’ responses will be elaborated as
well.
4.1 Formal health care system
Shenzhen Municipal Centre for Disease Control and Prevention (Shenzhen CDC)
The Shenzhen CDC was reorganized in early 2002 based on the former Shenzhen
Hygiene and Anti-epidemic Station (established in 1979). The Shenzhen CDC started to
operate independently in 2003 as a non-profit public service unit organized by the
Shenzhen municipal government. The Shenzhen CDC system includes three levels that
are at the city level (Shenzhen CDC), district level (district CDC) and lower than district
level—Fang Bao Suo (Prevention and Health Care Centers). CDCs in districts, such as
Luo Hu, Fu Tian, Bao An, Long Gang, Nan Shan and Yan Tian, are organized by district
health bureaus, and are under the leadership of the Shenzhen CDC in business.
The Department of HIV Prevention and Control usually assigns HIV investigation or
service tasks in districts, and assesses their task fulfilments regularly. For example, CDCs
in districts provide VCT, and they need to send their staff to MSM venues to carry out
health education and condom promotion, and they also need to follow up those PLWH who
reside in their districts. Fang Bao Suo is a special grassroots branch in the CDC system in
118
Shenzhen, and only located in Bao An and Long Gang districts, since these two districts
are sizeable in terms of geography or population, and district CDCs seriously lack
manpower. Fang Bao Suo is organized by district health bureau and is under the
leadership of a district CDC in business. Bao An and Long Gang district CDC therefore
assign related tasks to Fang Bao Suo, such as health education of HIV prevention in
high-risk groups of MSM and CSW and follow up PLWH. But they do not provide VCT.
In terms of composition of personnel who are working on HIV/AIDS issues, at the
city level, there are six formal staff, and a couple of informal staff who are not full
employees of the CDC yet; at district level, there are two to four formal staff, and a few
informal staff; in Fang Bao Suo, no specific formal staff work with HIV/AIDS, since they
work in the prevention of many diseases and intervention, and there are a few informal
staff as well. Most formal and informal CDC staff are from the fields of biomedicine or
epidemiology. Very few of them are from the fields of social science and humanities.
Role of the CDC in HIV prevention
The main responsibilities of the CDC include disease control and prevention, as
well as public health technical services and management. The Department of HIV
Prevention and Control is the office that manages HIV/AIDS issues in the whole territory,
including HIV surveillance, HIV epidemic investigation, epidemic management, condom
promotion, ART management and following up PLWH.
Free VCT is a major service that the CDC provides to the MSM population. Every
district CDC can provide VCT services, which cover HIV, syphilis and hepatitis C tests, and
the Shenzhen CDC provides a confirmation test for HIV diagnosis. The Shenzhen CDC
119
also cooperates with the SRW, a grassroots MSM volunteer group, to provide VCT to the
MSM population at the community level. The Shenzhen CDC and SRW also work together
in several HIV surveillances and HIV epidemic investigations in multiple MSM venues. For
example, in HIV surveillances, the team of the Shenzhen CDC practise blood taking, while
the team of the SRW facilitate the onsite activities, such as questionnaire investigations.
Moreover, the SRW also shares responsibilities for data collection, report writing and
regular daily health education and condom promotion.
Following up PLWH is another important compulsory service that the CDC provides.
For general PLWH, they are followed up every six months and provide free virus load tests
once a year, and for PLWH who are taking ART, they are followed up every three months.
The method of follow up is normally phone follow up. CDC staff call PLWH and ask them a
list of questions to fill in the HIV Case Follow-up Form, such as symptoms, sex partners,
condom use, needle exchange, methadone treatment, social support and care, TB test,
CD4 count test, and so on. For details refer to Appendix VII. And CDC staff also remind
them to have a normal lifestyle, nutritional food and proper physical exercise. The CD4
count test is a very important item in the follow-up service. When clients’ CD4 count is
quite low, such as lower than 200, a virus load test will then be used to see whether clients
need to take ART or not. And both regular CD4 count test and virus load test are free to
those PLWH who are diagnosed and accept follow-up with the CDC.
Condom promotion is another task for the CDC. The Shenzhen CDC and CDC in
every district generally carry out outreach health educations in MSM venues, and they
work together with grassroots organizations, such as the SRW. And they also use
advertisements and posters to promote condom use.
120
ART management is another heavy task for the Shenzhen CDC, since more and
more PLWH approach them and ask for free ART, and many of them are not eligible for
free ART in Shenzhen. Based on the national ART management regulations, the
Shenzhen CDC only provides free ART to those PLWH who have Shenzhen Hukou
(registered permanent residence), or those PLWH who have worked in Shenzhen for two
years and have a Temporary Residential Permit in Shenzhen and have bought social
insurance in Shenzhen. Those who cannot meet these criteria need to apply for free ART
in the local CDC where their Hukou is located.
The HIV Internet Report System (艾滋病网络直报信息系统) is a national e-system
of HIV epidemic reports, which has been well established at county/district or above levels.
After counties and districts update their data online, the upper level institutes, such as city
level CDCs, provincial level CDCs, and the China CDC (central level) can obtain their data
online very quickly. The People’s Republic of China Infectious Diseases Reporting Card
includes information of real name, parents’ names, personal ID, date of birth, working unit,
contact number, home address, phone number, occupation, diagnostic information, etc.
And the Infectious Disease Reporting Card—HIV/AIDS and STDs Subsidiary Card
includes information of a patient’s real name, parents’ names, ethnicity, marriage status,
education level, Hukou address, way of contracting HIV, reporting unit and physician,
phone number, etc. For details refer to Appendix VIII.
Shenzhen Centre for Chronic Disease Control (SCCDC)
The SCCDC is another system parallel to the CDC system in Shenzhen under the
leadership of Shenzhen Municipal Health Bureau, and CD Hospital is its major body. The
SCCDC has a designated responsibility to prevent and control communicable and
121
non-communicable chronic diseases, such as STDs, TB, leprosy, and other chronic
diseases. Since HIV and STDs are closely related, CD Hospital carries out HIV
intervention projects, which focus on preventing HIV through diagnosing and treating STDs.
CD Hospital has a VCT room and Rainbow Clinic (specifically for MSM), and its personnel
include two physicians, two nurses, three public health researchers, and one research
postgraduate student. CD Hospital provides free VCT and Syphilis and condyloma
acuminatum medical treatment to MB (Money Boys) specifically and it is project-based. In
the system of chronic disease hospitals, there are branches at district level, but these
branches do not carry out MSM-related projects and therefore do not provide specific
health services to this population. The SCCDC system does not provide any specific
services to HIV positive MSM.
A designated hospital for PLWH/AIDS patients
DH Hospital is a specialist hospital treating contagious diseases (e.g. hepatitis, TB,
HIV, H1N1 and SARS) and the only designated hospital that provides medical treatment,
in-patient services included, to PLWH/AIDS patients in its “Love Clinic” (爱心门诊 AIDS
Clinic). In terms of personnel, the Love Clinic in DH Hospital has three chief physicians,
two attending physicians and four nurses. One chief physician mentioned that she
received training on HIV/AIDS risk behaviour intervention, but it did not focus on
counselling. Other physicians did not report receiving any systematic training on
counselling and they only reported receiving training on occupational exposure.
The Shenzhen CDC refers eligible PLWH to DH Hospital when they decide these
PLWH need to take ART. When other hospitals diagnose AIDS patients, they then refer
these patients to DH Hospital and report to the Shenzhen CDC. When PLWH take ART in
122
DH Hospital, they are then managed by DH Hospital, such as follow up every three months,
regular physical checks, CD4 count test, virus load test, side effect management, and so
on. For those PLWH who are eligible for free ART, related tests are also free for them.
A specialist psychiatric hospital
KN Hospital is the only state-owned specialist psychiatric hospital, which has the
capacity to provide professional services, such as psychological crisis intervention,
psychological counselling, general psychiatric disorders and related training. But KN
Hospital does not manage specific clinics to serve PLWH. And there is no regulation of
referral between KN Hospital and the CDC system and other hospitals. Consulting
physicians in KN Hospital or not is totally up to patients’ personal choice, and no free
psychological and mental health counselling is available yet. The first treatment fee is
RMB75 and generally there are other test fees of around RMB100-200. It is different based
on different disease conditions. KN Hospital is the major psychiatric institute in Shenzhen,
and some other hospitals have mental health specialists, such as BD Hospital, Maternity
and Child Hospital, etc. Many HIV positive MSM do not know about KN Hospital. In the
office of the Shenzhen CDC where HIV diagnosis is made, no poster or related information
of psychological and mental health counselling in KN Hospital is provided. Only two
respondents reported using services in KN Hospital.
Other hospitals or clinics
Other hospitals, such as BA Hospital and BD Hospital, provide HIV testing for a
charge (around RMB50 per test). A few respondents reported taking HIV tests in these
hospitals. Based on those respondents’ experiences who took the HIV test in these
123
hospitals, counselling services were absent. Most of them took the free test in the CDC
system. Once they find HIV positive people, they will then refer them to the Shenzhen CDC
for further diagnosis. It was reported by some respondents, such as Zheng and Jin, that
these big hospitals scan HIV among patients (e.g. STD patients, and patients suffering
from anal diseases) without their informed consent, and once they find out who is HIV
positive, they may refuse the provision of health services (e.g. surgery) and just refer them
to DH Hospital.
When some respondents got sick, they went to some general community clinics for
medication. During my fieldwork, I went with Miao to a community clinic to treat his fever.
He did not disclose his sero positive status but he presented his real name, and he was
treated as a general patient. Some respondents just buy medicine in pharmacies. There is
no HIV primary care clinic in Shenzhen.
Figure 2 The flow chart of formal health system in Shenzhen related to HIV positive MSM:
124
4.2 Health insurance
Mandatory health insurance is another part of the formal health care delivery
structure. Based on the interpretation of Shenzhen City Social Medical Insurance
Measures (《深圳市社会医疗保险办法》解读) (Shenzhen City Administration of Social
Insurance Fund, 2008), social medical insurance has four levels: basic medical insurance,
local supplemental medical insurance, civil servant medical stipend and company
supplemental medical insurance, and supplemental business medical insurance. In terms
of basic medical insurance, it can also be divided into five forms of medical insurance:
integrated medical insurance, in-patient medical insurance, rural migrant worker medical
insurance, children and youth in-patient medical insurance, and serious disease outpatient
medical insurance. In terms of integrated medical insurance, the premium covers 8% of
the monthly salary of staff or workers. Of this, 6% is from the employer and 2% is from the
individual. Rural migrant worker medical insurance is bound to a health care centre on a
contract basis. The premium for rural migrant worker medical insurance is 8+4. That
means RMB8 from the enterprise and RMB4 from the individual each month.
The current study found out that the health insurance coverage was quite low
among migrant HIV positive MSM, since 44.4% (20/45) respondents did not have any type
of social and medical insurance. The reasons include that some of them could not afford it
(e.g. Zhou and Shen), some of them worked in small workshops which did not follow the
governmental regulations of social and health insurance (e.g. Hei and Hu), and some
respondents had no idea about it at all (e.g. Yan and Wei). This means many migrant
workers cannot get access to formal health care, such as medical treatments, since they
do not have insurance and local Hukou and many of them do not even have a Temporary
Residential Permit for two years in Shenzhen. They are therefore ineligible for free ART in
125
Shenzhen based on current governmental regulations. But in practice, it is case specific.
Zhou was an example. He was a poor migrant worker, without social and medical
insurance or a Temporary Residential Permit in Shenzhen. When he was diagnosed HIV
positive in the Shenzhen CDC, his CD4 count was very low, so the Shenzhen CDC
provided him supporting documents to obtain free ART in DH Hospital. Another
respondent—Ge—shared a story that his friend who also was HIV infected and in a
serious condition, but he did not have medical insurance or a Temporary Residential
Permit in Shenzhen, so he went to the Shenzhen CDC and negotiated with them, “I am
dying…how can you look at a person dying and do nothing…the Nation provides you a lot
of funding every year…”. Later the Shenzhen CDC helped him to have free ART in
Shenzhen.
Shen is another HIV positive migrant MSM and his case showed the limited help of
the health insurance for migrant workers. His working unit just bought him the rural migrant
worker medical insurance. He said, “It’s useless. The reimbursement just covers 70% of
the expenses. If you spend 10,000, you still need to pay 3,000. That’s a lot of stress as well,
since I just earn more than 1,000 per month.” And due to the terms of the rural migrant
worker medical insurance, health care services are bound with designated primary care
centres, so Shen was not reimbursed when he received health care in other health care
institutes. This meant that he was not covered for this type of health insurance when he
was hospitalized in DH Hospital.
4.3 “Four Free and One Care” policy
Announced by Premier WEN Jia-bao on World AIDS Day in 2003, the “Four Free
126
and One Care” policy consists of five major points: (1) free antiretroviral (ARV) drugs for
AIDS patients who are rural residents, or people with financial difficulties living in urban
areas; (2) free voluntary counselling and testing (VCT); (3) free ARV drugs for HIV infected
pregnant women to prevent mother-to-child transmission (MTCT), and HIV testing of
newborn babies; (4) free schooling for children orphaned by AIDS; and (5) care and
economic assistance for the households of people living with HIV/AIDS.
The practices of “Four Free and One Care” policy are not totally the same in
different places. In Shenzhen, free ART includes free related tests, such as CD4 count test
and virus load test, but in other places, these tests may not be totally free of charge (e.g.
more than RMB300 for a CD4 count test) and just provide free ARV drugs. The practice of
“Four Free and One Care” policy also has problems, such as insufficient confidentiality and
privacy protection, inconvenient free ART distribution, and insignificant financial aid to
PLWH and their families. These problems will be explored in detail in Chapter 7.
4.4 Informal health care
Self-care
Shenzhen is a migrant city, and most migrant workers do not live with their families.
For the MSM population, in particular, they live alone or share dorms or apartments with
colleagues or friends. Among the respondents, only two of them reported living with
families, and only five respondents lived with their boyfriends at the time of the interviews.
Therefore, the role of families in health care is limited among the MSM population, while
self-care plays a major role.
127
Mutual care among peers and friends
Sometimes care from friends or MSM peers is very important. Close friends’
networks are crucial for HIV positive MSM. A close friends’ network may be small or cover
only three or four close friends, but these significant friends provide very strong social and
psychological support and information sharing. For example, some respondents shared
with peers and friends information about using Traditional Chinese Medicine (TCM) to
control virus load and improve CD4 count. Some respondents shared illness experiences
with peers, such as paying attention to side-effects, and how to manage it. Some
respondents shared medical treatment information with peers, so that they would not be
rejected in surgeries in some hospitals. Practically speaking, experienced HIV positive
MSM are usually very helpful for newly diagnosed HIV positive MSM.
Care in Community-based grassroots organizations (CBOs)
CBOs, such as the SRW and HPG, share major responsibilities in health care for
the MSM population and PLWH. The SRW, for example, has a close relationship with the
Shenzhen CDC and can provide MSM health information, education and communication
(IEC) materials, free condoms and lubricant, and tests for HIV, syphilis and hepatitis C.
The SRW in total has about 200 volunteers registered, and about 40 of them were active in
the study period. The composition of these volunteers was quite diverse, and generally
these volunteers had stable employment and income. It recently set up an HIV positive
support group, which included about 40 HIV positive MSM. But this HIV positive MSM
mutual support group was not active, and only some of them took on responsibilities as a
volunteer. Some respondents joined this group and commented that the group members
were inhospitable and not active. It presented two issues. One is about social belonging
128
with PLWH and general MSM, since after becoming HIV positive, HIV positive MSM may
develop a closer identity with PLWH. Another is about whether the SRW is spending
enough resources and time to develop this HIV positive support group, since the SRW has
been overloaded in the work of HIV prevention and intervention among the general MSM
population.
VCT is a routine service in the CDC system. The Shenzhen CDC and CDC in every
district have a VCT room. The flow of VCT is also clear. But CDC staff in my fieldwork
reported low utilization of this service in the CDC system. Instead, many MSM went to
community-based grassroots organizations, such as the SRW, for HIV tests. During my
fieldwork, I saw many times on Sunday afternoon about 10-20 MSM visiting the SRW for
testing, and sometimes it was more than 30 MSM taking the test. I also saw that MSM who
visited the SRW were relaxed. They read IEC materials, chatted with peers or just sat
there surrounded by ‘tonglei’ (同类 births of a feather/congener). It was usual that some of
them met friends or acquaintances and said hello to each other. One walk-in client (aged in
his early 20s) told me, “It is really like a big family”.
The HPG is another example, which is a voluntary grassroots HIV positive
organization. HPG has about 20 active members who have roles in management, such as
psychological care, Internet propagation, medical treatment facilities, activity organizing,
supervision, legal aid and financial management. The HPG organizes some outdoor
collective activities for PLWH, such as dinner parties, KTV, hiking, etc. However, the
Internet is a key platform and the HPG has its own blog on a website. But more
connections among the HPG were presented in its three HIV positive qq groups. One is for
HIV positive MSM, another one is for general PLWH and the third is for HIV-phobic people.
And hundreds of people have been connected through these three qq groups, and it
129
covers not only PLWH in Shenzhen but also in the whole nation. Some of my respondents
also joined the HPG and they generally had good comments about HPG. HIV diagnostic
reports need to be presented when someone asks to enter qq groups for HIV positive
MSM and general PLWH. The HPG relies on mutual care among PLWH, and it closely
works together with DH Hospital and plays a major role in helping PLWH (e.g. AIDS
patients) to obtain treatment and health care, get access to free ART, obtain social and
psychological support, and facilitate communications between physicians and patients.
The HPG has only one source of funding from a larger NGO for PLWH in China, which
covers only one full-time peer worker’s salary (RMB1,500 per month) and the rent and
utilities of the office. The HPG’s office is located close to DH Hospital.
Care on tongzhi website
www.szjy.cc, entitled the Guangdong Global Fund Network MSM Population Health
Intervention Charitable Website (广东省全球基金网络 MSM 人群健康干预公益深圳交友网
站), is an important cyberspace operation that provides social and psychological support
for MSM as well as their HIV positive peers. It organizes a column, named “AIDS and I”,
which provides spaces for distributing information, sharing stories, and posting comments
and opinions. Tongzhi/MSM populations generally feel free to express their thinking on this
website using fake names. Moreover, through this website they meet people who would
like to talk to them, seek help and obtain related health care information. Some HIV
positive MSM post their real thinking in this column. Some respondents reported meeting
with HIV positive peers on this website, but it is voluntary-based and a kind of mutual peer
support. Respondents told me that PLWH’s true opinions can usually be found on this
website.
130
4.5 Services related to HIV case detection and follow up
According to the experiences of respondents, services related to HIV case detection
and follow up are part of the adjustment process they experienced. It is in line with an
argument that empirical data on the pathways in the use of health services are mainly of a
qualitative nature (Young, 1981; Kroeger, 1983). This pathway starts from the moment they
decide to have an HIV antibody test.
Factors affecting undergoing HIV antibody testing
Why do they have an HIV test? The first reason is normalization of HIV testing
(together with syphilis and Hepatitis C tests) as a result of regular large-scale free
screening for MSM, which was initiated by the Shenzhen CDC for surveillance and
research purposes. The CDC provides not only HIV testing, but also tests for syphilis and
hepatitis C, and all of them are free of charge. The SRW collaborates closely with the CDC
to implement the screening programme by recruiting peers to take up the test and offering
walk-in tests every Sunday afternoon. HIV testing hence has become a daily health care
service and even a responsibility in the MSM community. One volunteer, Murong, testified
in a gay bar: “As a tongzhi, it is responsible to have the HIV test”. Secondly, peer influence
is an important factor. Some MSM undergo the tests in pairs or in groups to reduce fear,
exchange information and consolidate the collective identity of being a tongzhi/MSM. The
shared experience may bring along mutual care and a shared memory. Thirdly, perception
of social stigma, fear and worry, personality and attitudes toward life deter the decision to
have the test. MSM assess both the risk of contracting HIV and risk of affecting their social
life. Disclosure of sexual orientation and HIV positive status would mean a death sentence
to one’s social life. Finally, cognitive factors related to HIV, the testing services and the
131
service providers also matter. Some respondents mentioned that when they went to have
the HIV test, they thought that they were not HIV positive and they just wanted to confirm it
through the test and then they would not worry about the ‘gao wei’(高危 high-risk)
behaviour they practised before the test. To undergo the HIV test is a kind of self-relief for
these respondents.
Pre-test counselling
Pre-test counselling is important to improve knowledge and attitudes toward HIV
infection and acceptability of HIV testing, and to subsequently increase access to
prevention and care, and to discuss the test process, implications of testing, risk
assessment, prevention and coping strategies. As presented previously, the SRW, a
community-based grassroots organization, is more accepted by the MSM population.
However, the services it provides are not professional enough. VCT is a typical example,
even though it is technically supported by the Shenzhen CDC.
The context was in the SRW office. When MSM came into the function room,
volunteers went to them and asked them in a friendly way whether they would like to have
a test. If so, volunteers would open a mini laptop where a questionnaire, a regular survey,
has been uploaded in software. MSM would choose to fill in the questionnaire by
themselves or ask a volunteer to help them. When not too many clients were in the office,
volunteers would let clients go into a small room to fill in the questionnaire for the purpose
of confidentiality. When many clients visited the office at the same time, they had to do it in
the function room and then paid less attention to the issue of confidentiality. The content of
this questionnaire included background information, information of sexual partners, sexual
behaviour, knowledge of HIV/AIDS, attitude to PLWH and substance use. Generally, it took
132
a client about 10 minutes to finish this questionnaire. Based on my participant observation
in the SRW office, the pre-test counselling part was absent in practice. Filling in the
questionnaire was not pre-test counselling, and in the process of filling in the questionnaire,
volunteers and clients lacked communication. After they finished filling in the questionnaire,
clients would be led to the test room for fingerprint scanning, which was used for checking
out whether this client had had an HIV test recently in order to avoid wasting resources. If
fingerprint scanning was passed, clients would then go to the next step of blood-taking.
The importance of pre-test counselling has not been presented in their real
practices. Instead more emphasis was on blood-taking. It could be seen that both clients
and volunteers had very low awareness of pre-test counselling, and some of them did not
have this concept in their mind at all. In many MSM’s perception and understanding, VCT
is just blood-taking. The communication between clients and volunteers is seldom about
condom and lubricant use. Volunteers did not present good skills in opening the discussion
of condom and lubricant use with clients. It could be seen that volunteers lack systematic
training in performing VCT. Some CDC staff presented a simplified understanding of
pre-test counselling. Staff Gu was an example, and he described, “pre-test counselling is
that I analyze for clients whether their behaviour is of high risk, and if they encounter stress,
they can talk to me.” Staff Xi also described, “Pre-test counselling is that if they are unclear
about anything, they can ask us. …we assess whether a client needs an HIV test, what
high risk behaviour he indulges in, and do an epidemiological investigation.”
For those MSM who firstly visit the SRW, they need more attention, and pre-test
counselling needs to be practised very well, so that rapport can be built up. For those MSM
who have visited the SRW regularly or several times, pre-test counselling needs to pay
more attention to their continuous practices of high-risk behaviour.
133
Blood taking
After clients pass the fingerprint scanning, they are given a tracking number, a small
blood container and a testing card. A doctor from the Shenzhen CDC (later, a temporary
hired middle aged female doctor) takes the blood of clients. A poster near the blood-taking
desk presents that the test result can be checked at www.szjy.cc, which is a major tongzhi
website in Shenzhen and has long-term collaborations with the SRW. Clients just need to
type in their tracking number and their PIN, and then they can view the test results after
four working days. One month after the test, the result on the website database is deleted.
After blood-taking, clients are asked to sit for 5 minutes before they leave. The
communication between clients and the blood-taking doctor is very limited. The doctor
wears a mask and is busy taking blood. It should be possible to improve communication
and health education between volunteers and clients in this few minutes after blood taking.
The Shenzhen CDC and SRW also carry out a lot of blood-taking in MSM venues,
such as gay bars, saunas, clubs and parks. These MSM are informed of the test result just
as other clients. In these MSM venues, blood-taking is actually the only thing they do. In
the practice of HIV testing in the CDC system and SRW, blood-taking is actually the major
work they do. It is so-called ‘zhu dong fa xian’ (主动发现 actively find out) PLWH in HIV
surveillance and epidemic investigation.
Asking for a diagnostic test
Generally, if someone tests HIV positive in a screening test, the CDC will firstly give
him a call to persuade him to have a diagnostic test in the Shenzhen CDC before the result
134
is provided to the collaborated website. If the screening test result is negative, CDC staff
do not respond to it as actively as to HIV positive cases and do not inform clients actively
by phone. Staff LG said, “some people would phone back to ask about the result, so we
then tell them the negative result, that there is no problem, and tell them about the window
phase”.
In this step, only the Shenzhen CDC is authorized to conduct the diagnostic test
and the staff in the Shenzhen CDC persuade clients to come back. When CDC staff phone
the clients and ask them to go back to have a diagnostic test, CDC staff need to comfort
them first and then try their best to ask them to come and have blood taken again. Since
the real name scheme has been carried out, personal ID is required in a diagnostic test.
CDC staff therefore need more effort to persuade clients to go back. In practice, the
Shenzhen CDC does not work with the SRW or other CBOs to follow clients up in this work.
Issues of confidentiality are an important reason.
When they call potentially HIV positive MSM to undergo a diagnostic test, they do
not say that they had tested HIV positive. Instead, they generally say that “there are some
problems with your blood, so please come to have a test again” or “there was a mistake in
taking blood last time, so please come to have blood taken again”. Respondents generally
perceived this as bad news, and underwent a certain degree of psychological preparation
for the coming positive test result. They then started suffering at this moment, and thought
about a lot of things, such as how come, what to do, worrying about disclosure or
feeling ”tian ta xia lai le (天塌下来了 the sky drops down)”, and so on. At the time of my
fieldwork, rapid testing was not allowed yet in Shenzhen. And therefore rapid testing was
not used to improve the screening test.
135
Diagnostic test and informing patients of HIV positive diagnosis
After being requested to undergo a diagnostic test by CDC staff, most MSM go to
have this diagnostic test, since they want to make sure what has happened, and some
expect that it is just a mistake. But some do not go back to undergo the test. The reasons
include that they cannot accept the result and do not want to face it (e.g. Ge); they are
worried about disclosure of their sero-positive status (e.g. Lv); they think that it is useless
to undergo the test again since they are infected already (e.g. Zhou), and they are not
clear about the difference between a screening test and diagnostic test. During my
fieldwork, I did not get access to observe the process of VCT in the CDC. The description
here is based on my inconsistent observation and respondents’ interviews. Chen was a
respondent who I stayed with for about six months. I went together with him to the
Shenzhen CDC when he went to have a CD4 test. It took just a few minutes to take his
blood and then we left. The communication between CDC staff and us was very limited. At
this time, another young man also came to have blood taken. I saw that the staff’s
communication with him was also very short and simple. Some MSM go to the Shenzhen
CDC to have the diagnostic test accompanied by friends or peers, while many of them go
there alone.
The diagnostic test is only conducted in the Shenzhen CDC (the main office). It is a
test to clinically confirm whether a person is really HIV infected. The venue is a general
office room, where CDC staff take the blood of clients. It takes about 30 minutes for the test
result to come out. Based on communications with CDC staff, generally, the vast majority
of them still test HIV positive. This time, Shenzhen CDC staff inform clients face to face
directly and correctly that they are HIV positive. Two to three staff take this work in turns.
One of them is experienced since she has met with many clients in recent years, while
136
another two are not so experienced and not well trained. In my fieldwork, I had the chance
to take part in CDC training on HIV and MSM issues, and counselling was part of the
training. However, the training relies on lectures and lacks role play.
Once diagnosed HIV positive, people are asked to read and fill in “the Informing
Letter for the HIV Positive Result”. This is the “gao zhi” (告知 informing). Through this
practice, newly diagnosed HIV positive MSM are seriously informed about HIV/AIDS
information, follow-up and referral treatment, rights and responsibilities (e.g. clients are
required not to transmit HIV to others maliciously). For details see Appendix IX.
After being diagnosed HIV positive, their CD4 count is also tested immediately. After
four working days, the CD4 count result is informed in a printed report. If their CD4 count is
lower than 200, the CDC provides a virus load test and then decides whether to suggest
that they take ART or refer them to take free ART in DH Hospital. Based on the newest
guideline from the World Health Organization (WHO), when the CD4 count is lower than
350, ART should be used.
Post-test counselling
Post-test counselling is another important part of VCT. In formal post-test
counselling, whatever the immediate results, after testing clients will receive information
about risk-free and safer sex options and learn about other sexually transmitted and
blood-borne diseases. Clients may receive referrals to programmes that provide emotional
support and help them address any barriers they have to reduce their HIV risk in the future.
In real practice in Shenzhen, however, post-test counselling is usually only conducted
when someone is diagnosed HIV positive.
137
After informing this result, many clients break down or become very emotional. CDC
staff mentioned that some clients cannot accept it and even try to jump out of the building
to commit suicide. The Shenzhen CDC therefore built a burglar mesh in order to prevent
clients from jumping out after being diagnosed HIV positive. CDC staff comfort those men
who cannot accept the result and are very emotional, and provide them more information
about HIV/AIDS, such as ART and the four free one care policy. However, CDC staff pay
less attention to those clients who do not present emotional reactions. In the interviews
with CDC staff, they mentioned that when they see that clients are very emotional they
then spend more time to comfort them. It can be seen that these CDC staff just rely on
explicit emotions to judge clients’ psychological and mental status, which indicates they
lack training in psychological and mental health issues. And in their practice, they lack a
focus of following up those clients most in need.
There are different needs and knowledge between CDC staff and clients. Clients
need more feeling of being cared for, while staff need protection from infectious disease,
such as TB. Some clients regard CDC staff using masks as a kind of disgust, whereas
CDC staff wear masks to protect them from TB transmission. A kindly reminder of wearing
a mask to prevent TB is therefore posted in front of the window on the counter. It presents
a problem in post-test counselling that some people do not know the difference between
the screening test and diagnostic test.
It is normal that clients need someone to talk to after being diagnosed HIV positive,
since they are very stressed and depressed. And lack of peer support is a problem among
the MSM population. Worse is that the referral from the CDC to grassroots organizations or
NGOs is not practised well. During my fieldwork, when I visited the CDC office with Chen, I
did not see flyers or posters about grassroots organizations or NGOs that HIV positive
138
MSM can turn to in the CDC office and normally CDC staff do not tell them this information
directly. Since the CDC generally does not refer clients to CBOs or NGOs, these
organizations play a limited role in post-test counselling. However, when HIV positive MSM
(PLWH) reach out to these organizations, they generally provide help, such as information,
comforting and networking.
Many HIV positive MSM do not need to take ART yet when they have just been
diagnosed HIV positive, while some of them are in a serious condition at the time of the
diagnosis. They are then referred to DH Hospital to take ART. The Shenzhen CDC tries to
help those clients who are really in a serious condition, even though they are not eligible
for free ART in Shenzhen.
DH Hospital services
DH Hospital is the only designated hospital that is assigned by the Shenzhen
government to provide medical treatment to PLWH/AIDS patients. A specific clinic, named
“love clinic”, is located on the ground floor in the in-patient building. Its service time is in the
morning on Monday, Wednesday and Friday. Later, considering the requirements of AIDS
patients, it also opened in the morning on Saturday.
DH Hospital provides physical checks for AIDS patients and PLWH who take ART,
such as hepatic and renal function, blood routine, CD4 tests, and virus load tests. The
China government has promised to provide free ART to AIDS patients and a physician said
that more than 90% of ART in DH Hospital was free, and a small percentage of ART was
self-paid. Generally the Shenzhen CDC refers patients to DH Hospital when patients’ CD4
is lower than 350, and a formal referral letter is provided. But free ART is only provided to
139
patients when their CD4 count is lower than 200. A peer worker who worked with DH
Hospital taking care of PLWH/AIDS patients estimated the number of PLWH taking ART in
Shenzhen as reaching 600, and about 60% of them are MSM.
Respondents generally gave good comments about the services in the Love Clinic
in DH Hospital. The HPG is a grassroots HIV positive group, and it works closely with the
Love Clinic. Zhang was a peer worker of the HPG who worked in the Love Clinic. Since
Zhang was also HIV positive, he got on well with patients in the Love Clinic and provided
them many help, such as sharing illness experiences with them, helping them to take
drugs regularly, and even helped them get access to medical insurance.
DH Hospital serves medical treatments to PLWH on one hand, and on the other
hand provides chances for PLWH to meet with HIV positive peers occasionally. Through
the daily contact, HIV positive MSM then can accept their HIV positive status and build up
an identity of PLWH. The test of CD4 count and virus load increases their feeling of control
over HIV. The discussion with physicians in DH Hospital helps them to deal with the
side-effects. ART not only helps PLWH to control HIV in their bodies, but also increases
their confidence and feeling of having a future. Since DH Hospital is a specialist hospital
for infectious diseases, some specific treatments, such as perianal abscess and anal
fistula that many MSM suffer from, are not provided.
Follow up by the CDC, DH Hospital or grassroots organizations
When MSM are diagnosed HIV positive, but do not need to take ART yet, the CDC
system then follows them up. In practice, CDC staff call PLWH once every six months to
remind them to have the CD4 count test and ask about related health issues. But some
140
respondents (e.g. Feng, Jian, Sun) reported that they have never received a call from the
CDC, even though they didn’t change their contact numbers. It can be seen from the
interviews of CDC staff and respondents that generally CDC staff ask PLWH about their
daily life, health status, sex behaviour and condom use or not, and then express their care
and concern.
When HIV positive MSM are referred to DH Hospital and take ART, DH Hospital
then follows them up, and the HPG plays a key role in this issue. At this stage, HIV positive
MSM generally accept their HIV positive status and build up an identity of PLWH since they
need continuous ART. Their link with DH Hospital becomes regular and routine. This part
of follow up is easier to carry out, compared with following up other PLWH not taking ART
yet.
141
Chapter 5 Psychological and mental health
Based on the interviews or interactions with newly diagnosed HIV positive MSM, an
important theme emerged firstly that they encounter different degrees of psychological and
mental health problems after the diagnosis. This chapter starts firstly with negative mental
health outcomes, including symptoms and associated factors, and then to positive mental
health outcomes, including integrating negative experiences of being HIV positive,
recovering, post-traumatic growth, and associated factors. Later, impacts of psychological
and mental health on sexual risk and health service seeking are pointed out. A summary,
discussion and service implications are provided.
5.1 Negative Mental Health Outcomes
5.1.1 Depressive symptoms
After the respondents were diagnosed HIV positive, depressive symptoms were
generally experienced, such as pessimism, feelings of boredom, feeling lonely, emptiness,
feeling injustice, anger, guilt, suicidal ideation, worthlessness, low self-esteem, no
confidence and the feeling of being stigmatized. Two respondents were diagnosed with
major depression in a local psychiatric hospital.
Fatigue (tired/weary)
Han said, “I was very ‘tui fei’ (颓废 grey and dispirited) at the beginning and totally
in a ‘wei mi’ (萎靡 weary) situation.” He felt “shen xin pi bei” (身心疲惫 a state of
emotional and physical exhaustion/burnout), and he did not disclose it to others,
and was in low spirits and felt hopelessness.
142
“When I see others are so happy, I feel very ‘di luo’ (低落 downhearted/in low
spirits), and I feel more stressed.” (Hei)
“I live very tiredly indeed, very boring. I cannot believe I got AIDS. I really cannot
believe it! I feel my whole life is over.” (Xie)
“Almost in a month, I was weary.” (Zhu)
Hopelessness/despair
“When I was just diagnosed positive, my psychological situation was very bad. I
felt the heavens were falling down. Everything became unimportant…In the first
one or two weeks, I felt despair, and had nightmares every night. Once I fell asleep
I had nightmares. I then woke up and felt I was dying soon.” (Qin)
“When I had the diagnostic report, I was numb and lost feeling in my whole body,
so giddy. A lot of things went into my mind. I felt my life was over and I felt despair,
very sad, and my future looked bleak. ” (Qian)
“I just felt the heavens were falling down. Everything was totally changed suddenly.
No future, no ideal at all.” (Zhao)
“All of my ideals were broken in a second. I felt it was impossible to achieve them. I
definitely could not believe it, and it felt like a dream.”(Sun)
Loneliness/isolation/withdrawal
“I look happy in my face. But when I am alone, I feel very lonely and fear…very ‘yu
men’ (郁闷 blue).” (Wang)
“When I got sick (HIV diagnosis), I felt very ‘gu li wu yuan’ (孤立无援 being isolated
and helpless). At that time I was so helpless. I cried all day long and it looked like a
dream, really incredible.” (Chen)
“I am so disappointed…very lonely, solitary and helpless.” (Shen)
“I did have some internet friends previously, but I don’t like to chat with them now. I
got to know some men here and we had calls sometimes, but I don’t contact them
anymore. I don’t know why, but I just don’t want to call them. Basically I have
isolated myself now.” (Xu)
“When I am in the office, I don’t talk to my colleagues. After work, I just go back to
my room. Some friends called me out, but I didn’t want to go. I just want to isolate
myself. I had these actions. It’s strange.”(Tao)
Ren withdrew from a relationship after he was diagnosed HIV positive.
143
Zhao withdrew from a regular sexual partner relationship with a man he liked so
much after he was diagnosed HIV positive.
Guilt and worthlessness
“I felt I owed my family a lot of things…I felt I was inferior to others and I am
different from others.” (Chen)
“I feel really sorry to my parents, a kind of ‘nei jiu’ (内疚 compunction/guilty).”
(Yan)
“After knowing my thing (HIV positive), my mother suddenly fell down due to
fainting. If my mother passes away after hearing my news, I would be ‘zui nie shen
zhong’ (罪孽深重 grievously sinful)…I am so sorry to my parents. This disease
mainly affected my family.” (Zhang)
“I am really sorry to my parents…my parents are not in good health, especially my
mother. I want to give them some money, but I am now like this (HIV positive) and
unable to do anything for them. …I feel it is meaningless to live, just like rubbish. ”
(Shen)
Jiang felt guilty about himself and he wrote in his qq space that “heaven may be
forgiven for its iniquities, but man shall not live for his sins”.
Sadness/depression
“I feel very very depressed, very pain to my families, very stressful.” (Xie)
“At the beginning when the doctor informed me (HIV positive), I didn’t feel too sad,
but days later, I started feeling quite sad.” (Jin)
“I am so suffering, cannot eat, don’t want to do anything, sleep in my bed the
whole day and just cry.” (Zhao)
“The suffering this ‘shen fen’ (身份 identity/status of being HIV positive) brings with
me is that I feel ‘sheng bu ru si’ (生不如死 a fate totally worse than death).” (Han)
“When I was diagnosed, I cried, I felt despair, and I also thought about suicide.”
(Zhang)
“In my life I have only cried twice and I cried very sadly and cried out. This was the
second time that I cried aloud and cried for a long time. …I felt sorry to my mum
and other family and missed them so much.” (You)
144
Suicidal ideation
“After getting the diagnosis, I was really bad physically and always had insomnia,
and therefore had a thinking of death.”(Hei)
“I would rather jump to my death, too suffering, very upset, and would rather die
sooner, just buy a bottle of sleeping pills and then leave this world.” (Shi)
“Here (MSM circle) is too ‘luan’ (messy, promiscuous and chaotic). There’s true
love, but very few. I committed suicide because of this (love affair), and got
involved with others.” (Qi)
“In 2006, I broke up with him (boyfriend). I was brokenhearted. My desire to
commit suicide was very strong.” (Qian)
Two cases of diagnosis of major depression
Qian went to see physicians in KN Hospital alone and was diagnosed with
depression. When I interviewed him the second time, he appeared (observation)
really depressed and he had lost spirit in his eyes and looked very tired. He
referred to having a stable identity of being a tongzhi. He wanted to look for a man
to set up stable man-and-man monogamous relationship. After the HIV diagnosis,
he became more certain that he would not go back to heterosexual marriage and
have children. However, he was the only child in his family and the family
obligations of getting married and bearing children were becoming heavier and
heavier as he was getting older. He admitted to his father that he was homosexual
but he did not disclose his seropositive status in a phone call, when his father
continuously called him, and he was worried and anxious. This coming out caused
a great rift and emotional distress in his family and extended family. His father was
very upset, and his aunties were very distressed and cried sadly. A consensus
came out from the discussion between his father, aunties and other members in
his extended family that he must get married and it was not his personal issue;
instead it was regarded as a family issue since he was the only son and the only
child in his core family. His decision to not get married was regarded as selfish
behaviour in his family and unacceptable. It seems that the stress from family
obligation plays a significant role in his development of depression.
Wu was also diagnosed with depression in KN Hospital. He has visited this
hospital several times. Actually, he was an adopted child in a rich family. When he
was a teenager, he was diagnosed with depression in this hospital. Before being
145
diagnosed HIV positive, he was very active in tongzhi circles, managing his
fashion shops and also working as a manager in a popular gay bar, having several
hundred gay friends and clients. After being diagnosed HIV positive, his
ex-boyfriend betrayed him and spread this news in tongzhi circles; he was
therefore put at the centre of gossip and threatened. His status of being HIV
positive was utilized by his competitors and other people to create trouble for him
or extort money from him. He was therefore forced to come out to face these
challenges directly. Worse was his involvement in recreational drug selling. He
was arrested by police and his family was informed about his status of being a
homosexual, HIV positive, a drug seller, and under detention. He was rejected by
his family and his economic ties and contacts with his family were cut off. Other
so-called friends (his new boyfriend included) all left him. He was totally isolated,
and he said selling drugs was the only way he could survive. In order to sell drugs,
he needed to take drugs together with clients generally. He is now addicted to
methamphetamine, which has worsened his depression.
5.1.2 Anxiety symptoms
After being newly diagnosed HIV positive, some respondents experience anxiety
symptoms, such as fear, worry, stress and internalized stigma.
Feeling scared/anxious
“I witnessed a friend of mine who got infected (HIV) and passed away…I am very
scared and I think I will be like him one day, I am very afraid of getting his
symptoms.” (You)
“I am afraid of not getting up again when I go to bed at night.” (Xu)
“After I was informed (HIV positive), I was very stressed that afternoon, very
suffering, and got very heat and hot in my head.” (Yan)
“I was also afraid in mind.” (Peng)
“At that moment I was also very afraid. Whoever faces this kind of issue would be
afraid, right!” (Jian)
“I was really afraid of passing away before my parents. Very terrible, when I was
thinking about this, I felt really very terrible!” (Yang)
146
Catastrophizing
“I imagine that when I develop AIDS, I may lose all of my hair, become thin and
bony and then die. It is very terrible.” (Xie)
“I worry that when I develop AIDS, my body will lose energy, become thin and bony,
and I even have no power to pick up a knife to commit suicide.” (Shen)
“Many times I feel there is something extra in my body, and I resist it in my mind. I
really want to get rid of it, but I can’t… (I think I will) die in a terrible way, looks not
like human nor ghosts.” (Ren)
“The body of AIDS patients would decay, woo, it is awful. I lose my appetite after
seeing these pictures.” (Tao)
Multiple worries
“After diagnosis, it is in a month. I am really lonely…depressed all along…almost
broken-down psychologically…and do something wrong in my work. …I definitely
worry. I used my real name in testing. I now worry my information will be disclosed.
My life and work might be affected. I am afraid of being disclosed…worry too
much.” (Tao)
“Actually I face very big stress … I don’t know how to face it when my parents
force me to get married…after being diagnosed HIV positive, I feel the stress is
much bigger than that of being a tongzhi.” (Kong)
“What I worry about now is that I provide them (CDC staff) those things (previous
partners’ contacts), I don’t know what will happen later, and whether they (previous
partners) may find me out (I might transmit HIV to them) later on…and my family
asked me to get married and produce children, how can I face it?” (Ren)
“Before I got infected, I had sex with many people, and some of them were friends
and we know about each other. I worry that they will get to know that I got infected
one day, and then they will tell all other people. I worry they will all blame it (getting
HIV infected) on me. At that moment, I might be cut into eight pieces and cannot
release their anger.” (Hua)
“Now I know about my own health situation, I am afraid then…at the beginning it
was a kind of guilt, and now it is a sense of crisis.” (Meng)
147
Rejection sensitivity
“I don’t want to contact others…I would be regarded as a monster.” (Hua)
“One time when a group of internet friends had a dinner gathering, one friend said
that someone got HIV infected, very terrible; this man always hangs out for 419.
He then labelled this man as ‘the leader of Five Poison Cult’, since this man got
syphilis, condyloma acuminate, gonorrhea, genital herpes and AIDS together. This
friend then reminded us to keep away from him. I thought if they know about my
getting infected I would be teased as another ‘leader of Five Poison Cult’. I
laughed together with them, but I was very uncomfortable in my mind.” (Zheng)
“If others know about you getting AIDS, you cannot stay in your working unit
anymore. Other people would…even their eyesight can kill you.” (Zhao)
“In this circle, about 80-90% people know about me. Now they know about my
thing (HIV positive), but no one says I am back. I am a person pursuing perfection
and I hope all of the people I know say I am good. But because of this, it always
brings with me big stress.” (Wu)
“When I went into the gate, she (a CDC staff member) asked me to wear a face
mask and she also wore a face mask and gloves. I felt a kind of rejection and fear.
It’s not like what is presented in the public services advertisements that they hug
you, such as Pu Chunxi and Yao Ming. But I don’t believe them. I can’t imagine if I
disclose (my HIV positive), people around me must be very fearful. ” (Xie)
Fear of losing control
“I worry a lot, worry about my parents, worry about later life, worry about
developing serious AIDS when my body has no more energy, is thin and bony, and
even has no power to pick up a knife to commit suicide…I may have some degree
of obsessive-compulsive disorder, and I always think about these issues. I don’t
want to think about it but I cannot control myself…think about these things every
day. Just like what they call obsessive-compulsive disorder. I was not in this way
previously. But I still have self-discipline and intellect, not too impulsive. ” (Shen)
“I am still afraid until now. If I develop symptoms, but I don’t have money to buy
medication, since I hear about that medication is very expensive, I am then just
waiting for death. I am so fearful …I work to earn a living and save some money,
but the medication is so expensive, I cannot bear it. I therefore fear about that.”
(You)
148
Anxiety and avoidance
“You know, your interviews make me very stressed. You know, I am now becoming
more and more afraid about loneliness. No one loves me and no one cares about
me. I really feel lonely. I have nothing now. And you ask me these questions. You
let me have to face this cruel reality that I am ‘ai zi bing’ (AIDS). I don’t want to be
bothered by this issue.” (Zhou)
“I am resistant to these people (HIV positive) in my mind, and don’t want to contact
them. When I was with them, I just realized that I was an infector. When I have fun
with general people, I may forget this identity (HIV infector) and the stress.” (Han)
“Now I don’t want to attend any activities organized by non-infectors’ organizations.
Even though others don’t know that I am an infector, I have some thinking in my
mind. I see others so happy, and then I will be in low spirits and feel stressed.”
(Hei)
Easily startled
“After the diagnosis, I am always in a state of dread. Once having sex, I feel some
psychological shadow is still there, and my erection softens soon…That’s a kind of
fear.” (Feng)
“After being diagnosed HIV positive, I was so resistant in mind…I remembered a
doctor called me many times for subsequent visits. I treated her very badly and my
attitude to her was very poor. I was really terrible at that moment, just like it was
the end of the world. No one would want to die, you know, at such a young age.”
(Zhou)
“Sometimes I am very fierce; no one would dare to bother me.” (Xu)
“I got this disease and my spirit would suddenly be very low; sometimes I really
want to blow my stack.” (Tao)
A typical case of presenting anxiety symptoms
Hua was a migrant labourer working in a construction company. He always felt
upset that he did not make good money and he had limited ability to raise his
family. His son had been beaten by others and received a head injury. He called
the police but was not treated fairly. In his job, he told his boss that he had been
149
diagnosed with an incurable disease but he did not mention HIV. He expected his
boss could be kind to him. However, his boss degraded his position instead, which
made him angry and he quarrelled with his boss. He felt deeply bullied and
oppressed. Worse, his boyfriend rang his wife and quarrelled with his wife and
disclosed his homosexuality and HIV positive status. His family was broken, and
his wife frequently called him and was clamouring not to raise his son and
daughter anymore. He felt his life entailed too much suffering. He always felt that
he was a monster in others’ eyes. He thought that if others knew about his
seropositive status, he would be kicked to death. He was very afraid. He frequently
moved houses. He said, “I don’t want to live in a place too long. I always feel
others stare at me strangely, quite strange. …I feel quite afraid…I have moved
house three times already, and I am going to move again next week…at the
beginning when I move to a new place, I am confident.. But after living there for a
while, I become afraid again. I feel fear when I go back home or go to other places.
I think once others know that I am this kind of person (MSM and HIV positive), I
cannot survive anymore and I have to move to other places…my family cannot
raise their heads high anymore. This is what I fear most.” Hua was now suffering
from symptoms of anxiety.
5.1.3 Factors associated with negative mental health outcome
When these respondents’ life histories were tracked back, it could be seen that
except for HIV-related stressors, the psycho-social problems which respondents
encountered were also very influential in their psychological and mental health.
5.1.3.1 Individual factors
Limited Information and knowledge
Limited knowledge and information of HIV/AIDS, especially the knowledge of
HIV/AIDS progression and management, made respondents afraid or uncertain.
Sometimes ambiguous information about HIV/AIDS made them confused and increased
150
their uncertainty. Most of them realize the difference between HIV positive and AIDS cases,
and practically speaking “needing to take ART” was generally regarded a cut-off point.
“In about a month, I was weary…but actually it was mainly because I had a very
limited understanding about this disease.” (Zhu)
“I am really not clear about this disease. What stage am I in? There is a lot of stuff
on the Internet, too much, but not necessarily professional.”(Qi)
“I do not know about a lot of knowledge (about HIV/AIDS).”(Fang)
“What should I do if I need to take medication? But I don’t even know when I
should take medication. I am not clear about it yet.” (Yan)
“Until now I don’t understand the whole process of HIV/AIDS progression.” (Shi)
“What are the symptoms progression and treatment process? There’s still limited
advertisements about that.” (Qin)
This was not only an individual issue. During my fieldwork, I saw that HIV positive
peers were the major sources of HIV/AIDS knowledge and information, especially
for AIDS progression and management.
Only two respondents presented as very calm but even seemed unclear about what
was going on after the diagnosis. One of them (Wei) was a young man, aged 25, from the
Uygur ethnic group in northwestern China, and another one (Li) was a young man, aged
21, and he was from Hunan and had lived in Shenzhen for years. Both of them had very
limited information and knowledge about HIV/AIDS, even though they had heard about it
before.
Here is part of the interview. A is me, and B is the Uygur young man.
A：Do you think you are HIV infected or not?
B：No.
A：Do you know about what HIV is?
B：I don’t know about this.
A：Have you heard about AIDS before?
B：Yes, I have heard about it.
A：What is AIDS then?
B：That is…I don’t know how to say.
151
A：What is AIDS about?
B：Well, I don’t understand.
A：What kind of disease is it?
B：Well, I still don’t understand.
Li was the second young man. He said, “I am one track-minded. (When I was
informed that I was HIV positive by the doctor) I said I was ok and put the report in
my bag, and then I went back home. I am one track-minded and my thinking is that
I can’t do anything and the situation is beyond retrieval. I just want to treat myself
better and pay more attention (to my health) later on.”
Perceived constraints due to being HIV positive
Some respondents worried that working too hard would reduce their CD4 count and
therefore deteriorate their immune system. HIV prohibited respondents from working hard
and therefore made them feel disabled and worthless, which extremely decreased their
confidence and self-esteem.
“After taking part in this activity, I saw others were very happy, and I became more
downhearted and felt more stressed. I admired how others would not get infected
and they still have a long way to go and can fulfil a lot of things. But I cannot work
as hard as them to fulfil my dream since I get too tired and my body doesn’t allow
that. I therefore became especially afflicted.” (Hei)
“In terms of my career, I cannot bear getting too tired anymore and sales work is
too tiring. When I want to work hard, I don’t have this opportunity anymore. I feel
exhausted…If I passed away one day, I cannot donate my organs since they
cannot be used and the body needs to be burned. You cannot contribute anything
to society. You see, I feel that it is meaningless to live, just like rubbish.” (Shen)
Frightening images
The terrible images of AIDS patients appearing in some respondents’ minds made
152
them scared or anxious. These images were shared within HIV positive groups, or showed
in the media and on the Internet.
“Whoever hears the three words ‘ai zi bing’ (AIDS), feel fear. ….It can be seen on
the Internet that the body of AIDS patients decay, woo, it is awful. I lose my
appetite after seeing these pictures.” (Tao)
“Anyone who has common knowledge realizes that once getting infected…I don’t
want my family to see me die in such a terrible way, looking not human nor
ghosts.” (Ren)
You witnessed a friend who was infected with HIV and passed away. You said “I
am very scared. If I am like him one day, the appearance of getting AIDS is very
terrible. I am very scared.”
“I saw through the Internet that a patient in Shanghai developed AIDS and his
body was decaying. I imagine that when I develop AIDS one day, I might lose all of
my hair, get thin and bony, and then die. It’s very terrible.” (Xie)
“One patient from Qing Dao was in a serious condition. When other HIV positive
people went to see him, he even had no power to pick up a knife. You see, it is so
terrible.” (Shen)
Taking ART and the side-effects
Nine respondents took ART, but some of them (6/9) had side-effects, such as
vomiting, skin rashes and stomach ache. They wondered whether these medicines were
really good. These problems exercised as stressors that made them low spirited, in grief,
indignant and wanting to give up.
“After I take ART, I don’t feel better and my spiritual status is very poor. I don’t
know whether it’s because the drug is not good. You see, I have lost interest in life
and my motivation. Previously I was quite white skinned, but now I am so black.
It’s all because of the medication. I have to take drugs every day, and I feel like
vomiting when I see the drugs. I am really annoyed about taking the drugs every
day and am depressed sometimes. Work and stress...sometimes I feel it is too
hard and then get indignant…before the rural new year, I was hospitalized and it
153
was caused by the side-effect of ART in that I got a skin rash. It cost me more than
RMB10,000. Even though ART is free, other spending is still high.” (Shen)
“After I take medication (ART), I am in a lot of pain. One of the drugs is homemade
and has huge side-effects. It hurts my stomach. I never feel comfortable after I
take the medication…Previously I would like to express my feeling in my qq
signature. I wrote I want to give up. Later I realized that my attitude would affect
others. If others want to take ART, my words would make them afraid to take ART.
I therefore stopped expressing my feelings in my qq. I am now like the dumb man
eating the bitter herb and suffering in silence.” (Feng)
“In the process of taking medication, there was a strong response. It made me
suffer and skin rashes appeared continuously. My stomach was uncomfortable.
One type of medication made me giddy.” (Yang)
“What I worry most about is complicating diseases and the side-effects of ART.
When I was hospitalized, I thought of death. This disease made me suffer too
much. I could not eat, got serious fever over 40 degrees. At that moment, I
suffered too much and wanted to give up the treatment. I would rather die.” (Ge)
Internalized homophobia
HIV pushed respondents to have negative interpretations about themselves, such
as being dirty, promiscuous, and being punished and further stimulated a spoiled identity of
being an HIV positive tongzhi/MSM.
“I haven’t been back to my hometown for nine years. Honestly speaking, I feel I am
very dirty (because of his HIV positive and his homosexual activities with many
boys and men in his hometown).” (Zhou)
“Actually I bear very big stress in these years. The stress of being a tongzhi is
already very big. After being diagnosed HIV positive, I feel the stress is much
bigger than that of being a tongzhi. When you tell others you are HIV infected,
others definitely regard you as very casual and promiscuous, all that bad stuff.
This prohibits you talking to someone. I am really suffering in mind. Sometimes
when I am alone, I cannot control my tears and they drop down unconsciously…I
now have lost confidence with everyone in Shenzhen, and people are
untrustworthy indeed. ”(Kong)
“I think it’s a kind of punishment to me. Because I was previously too licentious,
154
too self-indulgent, too promiscuous; I was therefore punished.” (You)
Internalized HIV stigma
Some respondents internalized HIV stigma and presented strong self-stigma. They
regarded themselves as toxic, inferior, evil, shameful, a virus bringing bad luck, a monster,
etc. Self-stigma stimulated negative emotions and deteriorated their mental health status.
“It’s a kind of punishment. Heaven (god) is really punishing me. I remember when
my father passed away, I did not go back home to ‘shou si’ (守尸 death-watch
which is the role of a son at his father’s funeral)…I am now HIV positive and I am
very toxic. I feel I am inferior to others and I feel I am evil. Only those dubious
characters would get this rubbish disease.” (Wu)
“I hope to be understood by more other people. Sometimes others regard you as a
monster. The feeling of being discriminated against is very hard…Sometimes
because I got this disease, I feel inferior to others.” (Zhu)
“If I look for a partner without this disease, he might dislike and avoid me…I would
not let others know about my seropositive status. Once I disclose it, I think I cannot
live in this place anymore. Many people look at you with strange eyes.” (Zhang)
“Now when I am searching for someone and he says he likes/loves me, I feel that
he must be a bad guy. I have been HIV positive and he dares to make friends with
me. It is heaven (god) who lets me punish him. If we break up, I would say the
heaven doesn’t want him to be hurt and let us separate. He is a good person.”
(Kong)
“If I get cancer or leukocytemia, I would disclose it to others. But this (HIV positive)
is too shameful and embarrassing, and I don’t want to live anymore.” (Shen)
Suffering from comorbidity
Some respondents suffered more, since they developed some other diseases apart
from HIV infection, such as skin diseases, opportunistic infections, insomnia, STDs, anal
diseases, etc. These problems deteriorated their emotional and mental health status. For
155
example, it made them angry, have suicidal ideation and feel it is unfair or are very bored.
“I want to die because after I was diagnosed, I grew red dots all over my body and
it was very itchy, and I thought it was an opportunistic infection. At that time I was
in a very bad condition, very weak physically and always suffering from insomnia. I
really suffered too much and wanted to die at that time…I went to hospital later
and the doctor said it was allergic/anaphylactic eczema of the scrotum.” (Hei)
“This disease (condyloma acuminatum) is really difficult to cure, and it always
relapses. I wonder whether it can be cured indeed. In these two months it has
relapsed twice already. I have had surgery for four times, but every time after laser
therapy it relapses again. Yesterday I had laser therapy again. I just feel this
disease is really endless.” (Zheng)
Jin said, “DH Hospital cannot provide professional anal surgery since they don’t
have this specific anorectum section and doctors. I went to other hospitals, such
BD Hospital and BA Hospital, but they performed an HIV test and found I was
positive and they then didn’t do surgery for me…I got angry. I then had to go to a
small hospital to conduct the surgery. It cost me RMB16,000 in total, a lot of
money.” Later, he was also diagnosed with syphilis.
“I also suffered from a kind of skin disease, very allergic, always having many red
dots. And it prohibited me from looking for friends (boyfriends). Other men didn’t
know about it and may think it’s a kind of infectious disease. Actually it’s a kind of
psoriasis. It’s genetic and made the skin atrophic…and blood vessels revealed. I
therefore felt that a lot of misfortunes were happening to me.” (Xie)
Substance use
Substance use, such as recreational drug and alcohol use, were reported by some
respondents (e.g. four respondents used methamphetamine and five respondents used
alcohol). For those respondents who used recreational drugs, such as methamphetamine,
they experienced serious mental health problems (e.g. depression). For those
respondents who used alcohol, they were also not so good emotionally and mentally, such
as feeling bored or struggling.
156
Wu sold drugs, such as methamphetamine, and he used drugs with groups of
young men. He had been diagnosed with depression in a psychiatric hospital.
Lv used methamphetamine with friends. And he also realized that he was addicted
to
methamphetamine.
He
said,
“because
of
playing
with
this
thing
(methamphetamine), I became mad…having methamphetamine many times
caused me to feel especially empty, especially lonely.”
“Sometimes I am in a bad mood, and think a lot of things. I buy bears and drink,
until three or four o’clock at night and don’t want to sleep, just like being against
myself.” (Tao)
“Sometimes I buy bears and drink, watching others walking around, just killing
time.” (Xu)
5.1.3.2 Interpersonal factors
Difficult to look for partners
It is difficult to look for a partner in MSM circles. HIV makes it more difficult for
respondents to look for partners. Some respondents worry about being refused and hurt
again or transmitting HIV to partners.
In the case of Qian, HIV made it more difficult for him to look for partners since he
thought that no one would accept an HIV positive partner and he wanted to look
for a sero concordant partner.
“In this circle, people are not frank and honest to each other; instead they are wary
of each other. There is a kind of estrangement among them. On one hand they
want to look for real love, but on the other hand they worry about being hurt if they
devote their love…I feel I even have lost the opportunity to look for partners now.”
(Shen)
“I feel it is really difficult to look for a partner…Even in the circle of HIV positive
people, the people like me who are low educated, lack of training in working skills
or technologies and low income are few and I feel it is difficult to look for
someone.” (Hei)
157
Reduced social support (network)
For some respondents, the diagnosis of being HIV positive narrowed their social
network, and restricted the sources of social support for them to some degree. Feelings of
boredom, loneliness, low spirit, being afraid, etc. were experienced.
“I have greatly reduced contacts with friends, straight or gay friends included. I
didn’t talk to colleagues in my company. I didn’t want to hang out with friends. I just
stayed in my room after work. I isolated myself…after I got this disease; I would
suddenly be in very low spirits and sometimes wanted to lose my temper. It may
be caused by big stress. It happened two or three times per month.” (Tao)
“I am really in a bad spiritual state and I changed a lot in the past half year. I dare
not look for them (friends), no friends, no ‘lao xiang’ (fellow townsmen). I just
closed my mind. I feared they might ask me and I don’t know how to answer
them.” (Shen)
“After work, I stay at home alone. I feel more bored than before, no friends, and the
feeling of loneliness is more serious. I even didn’t talk to my colleagues. And I
didn’t want to chat with those previous friends.” (Xu)
“Sometimes I suddenly got mad and typed some words casually in the qq
group…anyway, I followed them no matter what they said. Once someone paid
attention to me and tried to chat with me alone, so I logged out. I was afraid, you
know, this man transmitted (HIV) to me, and I then transmitted (HIV) to another
man. It’s really difficult to explain. And I also felt sorry. Gradually I didn’t want to
chat with them.” (Zheng)
Intimacy and sex
Respondents still needed intimacy and sex. But when they met sero unknown
partners, having sex and developing intimacy made them fearful. Non-disclosure or fear of
disclosure put them in a nervous state. The dilemma between casual and regular
relationships made them struggle a lot mentally in that some HIV positive MSM don’t know
whether they should maintain casual sex with others or should build up regular
158
relationships with others, since they worry about serostatus disclosure. They therefore
suffer a lot.
When Xie met someone he liked so much, but he could not have sex with him, he
would feel upset. He said, “We had a very good feeling. We were in the same
social stratum. He wanted to look for a lifelong boyfriend and he would not get
married. He showed me his family photos and introduced his family. You know, we
had a very good feeling about everything. But I am this kind of person (HIV
positive), and it’s impossible. If we are boyfriends, we would definitely have sex
frequently and use no condoms. He will get infected eventually. I therefore have to
forget him.”
“I dare not look for boyfriends now. You know, I dare not look for long-term friends.
If we are long-term boyfriends and live together, it’s impossible to use condoms,
isn’t it. Just like a couple to live together, how can we use condoms? I therefore
dare not look for boyfriends I love. Sometimes when I meet someone I like so
much, I have to control myself not to fall deeply in love …I will have a feeling of
guilty. I will feel he is so excellent but I am an ‘A’ (HIV positive), and I will feel sorry
to him.” (You)
“I don’t want to contact them. When we have contacts or hang out, they will
deliberately approach me…after we get familiar with each other, it always happens
that we sleep (have sex) together. When we hang out, it is general to have some
kind of desire (of having sex). I therefore don’t want to get familiar with them and
don’t want to chat with them or see them.” (Zheng)
But some respondents did not disclose their condition to their partners which made
them suffer and anxious.
“I met with some hesitation in my love affairs. I got to know a man, not an HIV
positive person, who liked me so much and was actively approaching me. When
we had sex, we definitely used condoms since we just started to have sex and we
distrusted each other. This made me relieved. But after we stay together for a long
time and set up a stable relationship we don’t hang out with others. If he insists on
using no condoms, how can I explain it to him? It makes me scared. Could I tell
him I am HIV positive or break up with him? I am really afraid to face this
encounter. This is the biggest problem I have faced in these months.” (Kong)
159
During my fieldwork, I visited Zhu with Ping, Qiang, and Chen. When Zhu saw me,
he felt embarrassed, and he asked me to his room. He asked me not to tell his
boyfriend of the issue of the interview. He asked me to use his laptop and I
therefore stayed in his room to watch an online movie. He looked nervous, and
guilty. I guessed he had not disclosed to his boyfriend his sero positive status (This
was confirmed in the second interview with Zhu, and he said, “Since I did not
disclose it to him (his boyfriend), I felt it was not good and I was always in fear.”).
When we left, Zhu did not say goodbye to us, but his boyfriend walked us to the
gate.
5.1.3.3 Cultural factors in community and family
The issue of “face” of oneself and one’s family
A Chinese cultural factor of “lian” (脸 face), such as property (embedding a stigma
against poverty), marriage (embedding a stigma against single adults who do not fulfil
family obligations), and moral judgment against PLWH (embedding a stigma against those
people who got infected through culturally immoral ways, such as multiple sex partners,
homosexual activities, commercial sex and taking drugs), made respondents worried or
anxious.
“I miss my hometown so much, but I dare not go back home…economic stress is
the first reason and my job is not good now; secondly some of my relatives know
about my problems (MSM and HIV positive) and they feel terrible, and are
disdainful and hesitant. They don’t understand me.” (Hua)
“I only feel guilty toward my parents now. It was not easy for my parents to raise
me to be an adult. Other people in my village tease them that their son is so old
but not married yet. My parents would suffer in face…If it is disclosed that it is
because of AIDS, my parents cannot save face.” (Shen)
“I haven’t been home for nine years. Honestly speaking, I feel I am so dirty…my
uncle is very serious about the issue of face…I am afraid that relatives in my home
will know about (my homosexuality and HIV positive) …I am really afraid to go
160
back to my hometown.” (Zhou)
“I generally care about face. I don’t want them to look at me with coloured glasses.
I especially don’t like others to look at me with cold eyes.” (You)
Taboos and prohibitions in open discussion of serious diseases and sexuality
The cultural restriction of open and in-depth discussion of being homosexual and
HIV positive prohibit respondents’ adjustment psychologically. Some respondents can talk
to someone, such as close friends, boyfriends, and family, but the communication is just
partial, and they cannot openly and fully talk about sex, love and AIDS.
“AIDS is the most sensitive topic in gay circles…I told my elder brother that I had
an incurable disease and sent him a website link. He is a teacher and I think he
should understand. He comforted me for a while. I told him to see a show on
CCTV (about AIDS), but he said he didn’t have time. Later when I talked to him, he
didn’t care too much. Anyway he felt I played around causally and were very
promiscuous.” (Zhao)
Hei said, “Before I consulted a psychologist, I did want to talk to others about my
things. For example, how many partners did you have? What role did you play?
And how did you get infected? I really got annoyed and didn’t want to talk to
others.” Hei disclosed his condition to his mother, but they didn’t have an in-depth
conversation.
Significance of filial piety
Getting HIV infected made some respondents feel sorry for their parents deeply. To
die before one’s parents is very impiety in Chinese culture. Not getting married and having
children to maintain the family bloodline is another serious matter of impiety in Chinese
culture, which is called “bu xiao you san, wu hou wei da” (不孝有三，无后为大 Without
male offspring is the worst form of impiety).
161
“I was not afraid of death. I was really afraid to pass away before my parents. This
is really very terrible. If I am in a very serious condition and have no more time left,
I would not die in front of them, because it would make them suffer too much.”
(Yang)
“The most difficult thing for me is how to face my parents. I feel really sorry for
them. Marrying a wife is not the priority and would be only to satisfy my parents. I
am 30 years old already. My parents want me to get married soon. It is good to
comfort them. (But he cannot get married now).” (Yan)
“At home, I would do whatever my parents ask me to do. I don’t want to make
them get angry or worry. They asked me to manage our shop. I did. It’s too boring,
and I sit there all day long. But I have no choice. They know I have this disease
and they would worry about me if I worked outside.” (Zheng)
“First, I think about my family. I feel I owe a lot to my family. A lot of things, I need to
pay them back.” (Chen)
“After knowing my thing (HIV positive), my mother suddenly fell down in a faint. If
my mother passes away after hearing my news, I would be ‘zui nie shen zhong’ (罪
孽深重 grievously sinful)…I am so sorry to my parents. This disease mainly
affected my family.” (Zhang)
Stigma and discrimination against PLWH
Some respondents experienced stigma and discrimination after disclosure. They
were humiliated, isolated, gossiped about, extorted for money, refused health services or
judged morally on the basis of how they got infected. Some respondents also realized
there were stigma and discrimination even within PLWH.
“Some people abused me after I disclosed my condition to them on the qq
group…They scolded me ‘shen jing bing’ (神经病 madness), ‘don’t transmit (HIV)
to others’, ‘I don’t want to talk to you’, ‘you got a deadly disease’, etc. They used lot
of abusive terms to humiliate me.” (Hei)
“Even within HIV positive groups, there is stigma/discrimination. I can feel this.
When in the first meet, if he/she was infected through receiving blood, he/she
would give you a strange look…Since many homosexual men got infected, an
162
infected man is usually regarded as gay. If he is straight, he would be regarded as
having gone whoring. If it is a girl, she would be usually regarded as a prostitute.
Actually this thinking is a kind of background discrimination.” (Sun)
Jin and Zheng were refused medical surgery by hospitals after their HIV positive
status was disclosed.
Zhang was isolated by this “lao xiang” (fellow townsmen) after he disclosed to
them his seropositive status.
Wu was gossiped about and extorted for money after he disclosed his status to
others in MSM circles. Wu’s status was disclosed by policemen to his family…he
was totally abandoned and given up by his family and extended family.
Ge disclosed his condition to his family, but only his sister and sister in-law cared
about him…his father and brothers didn’t care about him.
5.1.3.4 Institutional and structural factors
Conflict with the CDC in treatment, privacy and attitudes
Access to free ART in Shenzhen is conditional, and it requires permanent
Shenzhen household registration, or working in Shenzhen for two years and temporary
household registration with social insurance. Many migrant workers cannot meet these
criteria and face barriers to free ART in Shenzhen. Confidentiality and patients’ privacy
does not appear to be a priority in the national CDC system. Some respondents therefore
encountered conflicts with the Shenzhen CDC when they tried to have free ART in
Shenzhen. Moreover, in other cases, respondents met some inappropriate and
unprofessional and non-skilful health care providers who blocked their path of releasing
stress and anxiety. These encounters let them feel disappointed, angry, and/or upset.
Xie was disappointed and angry with the CDC since they did not protect privacy
well. “I am really disappointed. When I was having the test in the Shenzhen CDC,
they didn’t mention about the system of direct Internet reporting. I didn’t
understand why they directly report to the WH CDC without my agreement. And
163
then the WH CDC called the district CDC, and then informed the health centre in
our town, and then the principal of the health centre went to my home to look for
me. You know, a lot of people know about this principal…my family was very
nervous, and it made me very nervous as well. My family called me crazy and I
could not bear it anymore. Privacy protection needs to be carried out from the
beginning to the end, but they didn’t do it well. It made me really hurt
psychologically.”
Kong described, “Later they asked me whether I have Shenzhen Hukou
(registered household), or a residence permit. I didn’t. He said in my case I have to
pay for the treatment and free medicines are not available for me. …I called the
local CDC in my hometown and consulted them as to what I should do. They even
asked me to apply for a certification to certify I need help from the government
since the economic status of my home is bad and I cannot afford the treatment.
This thing cannot be disclosed actually, and that’s my privacy, right! If I do so,
people in my hometown would know about my disease, right! I would rather die,
instead of applying for such certification. …I really wanted to get revenge on them
at that time. They didn’t protect my privacy and confidentiality. I was very angry at
that moment. This thing (HIV positive) would be publicized by them, and what
privacy is that?”
Kong said, “In February, I got an STD and went to P Hospital. They required blood
testing …The immoral doctor even said to me that ‘if you really have AIDS, do you
still need treatment?’ Which disease is more serious?’ I felt, do people who get
HIV infected deserve to die and they don’t need to treat the disease? I feel he
really lacks medical ethic.” Tao also experienced such a careless moment on his
second visit to the CDC.
Feng said, “I went to the CDC to have the CD4 test and the result showed that my
CD4 count was only 121. But the staff in the CDC office didn’t even tell me to take
ART. I feel that the CDC is not responsible. They should follow up patients, but
they don’t.”
Lang went to the Shenzhen CDC with a PLWH to ask for free ART, but this PLWH
was not eligible for free ART in Shenzhen. Lang quarrelled with the CDC staff.
Financial burden
No respondent reported paying for ART yet. But high spending on health care and
medication, including general medical costs or specific spending on HIV (e.g. treating
164
complications and the side-effects of ART), and conditions for free ART made respondents
worry and fearful. Some respondents had faced these problems already, and some
respondents heard about these anticipated issues from peers and worried that they may
face the same problems in the future.
“I am now very afraid, very afraid. When I am in a serious condition and need to
take medications, what should I do since the spending (for medication and health
care) is so high.” (You)
“He said it may cost RMB2,000 to 3,000 (USD310 to 460) per month (for ART). I
said I would rather die because how can I pay this every month (his monthly
income was only about RMB1,000)?” (Kong)
“It has been the fifth surgery. Only the treatment of condyloma acuminatum cost
almost RMB10,000 (USD1,500). It always relapses.” (Zheng)
“I heard from peers that once you get AIDS it costs hundreds of thousands of RMB.
For those who have medical insurance, they still need to pay a certain amount of
money by themselves.” (Feng)
“Last time I was hospitalized, it cost me more than RMB15,000. I used my social
insurance, but I still needed to pay more than RMB2,000 by myself (his monthly
income is about RMB3,000).” (Zhao)
Employment and working conditions
Some respondents were fired or degraded in their work after their sero positive
status was disclosed. HIV constrained some respondents from working hard, and limited
them in the scope of looking for a job. Some respondents’ economic status as a migrant
worker deteriorated leading to a downward cycle of poverty and potentially increased
propensity for ill health. These made some respondents feel angry, unfairly treated, upset,
gloomy, depressed and stressed.
Shi said, “I got a cold, got better and then had fever again, and it relapsed again. I
finished my sick leave to treat the cold, and because of the cold I looked thin and
165
low spirit or lethargic. My boss felt something was wrong since he studied
medicine in college, and he introduced me to a physician in chief in B Hospital to
check up and test it out as positive. …Later he asked me to go home for a rest.
That meant I was fired. Bosses are all like this. Whoever hears about HIV, cannot
accept it at all.” It can be seen in the interview a feeling of anger and unfairness
from his face and tone.
Hua was degraded in his work position after he disclosed his condition to his boss.
He said, “My job is not good. I told my boss I had an incurable disease and had
only few years left, but I did not tell him I was HIV infected. He then degraded my
position and replaced me with his relative.”
“My work was too hard in June, and my body could not bear it. I was extremely
gloomy, depressed and lost interest. I worked 12 hours per day, and stayed up
deep into the night, but my salary was low, less than RMB2,000 (USD 300).”
(Shen)
“I need a stable job and a stable life. …my job and income is quite good. My
leaders treat me quite well. …If I lose my job, it must be very awful and I would not
know how to survive. …My work is quite tedious, very boring, but I try my best to
avoid being bored. I cheer myself up. …Now many persons want to seize my
position. ” Later I saw him write in QQ Space that “if they kick me out, I will let the
whole of Shenzhen know about me (that means he would do something to get
revenge on these men, and he was really angry)”. (Zhao)
“My stress is very big, because I am now doing my own business and I feel my
economic situation gets worse in April and May.” (Meng)
Hei got infected with HIV and hepatitis B. He said, “I cannot pass the body
check…I can only work in small workshops or small factories which only employ
around 10 to 20 workers, since they do not require employees to undergo a body
check.”
5.2 Positive mental health outcomes
5.2.1 Integrating negative experiences and recovery
Negative mental health symptoms appeared common among newly diagnosed HIV
positive MSM, even though these negative mental health symptoms were not the
mainstream experiences after months of adjustment, and they did not interfere with the
166
respondents’ daily life too much. Sometimes these negative experiences reoccurred when
respondents experienced stress in their daily life, since these experiences are part of
respondents’ memories, even though respondents psychologically calmed down and were
back to normal functioning.
Qin felt tired, irritable, and anxious in his work sometimes and he complained
about having no personal time. He said, “I didn’t know what’s wrong. I seem not to
be happy to see that others are better than me. I gradually developed this ideology.
I don’t know whether it’s because I am too tired…irritable all day long. I estimate
this condition will continue for one or two months.”
Chen had a previous emotionally laden memory. He said, “A half year has passed.
I feel very tired. Previously I was in a situation of emptiness. I have grown tired
because of many things, including some heavy memories.”
Shi testified to feeling a psychological block that he had hope that new drugs that
could combat HIV would come out soon and he always feels he is different when
he hangs out with colleagues.
After three months, most respondents felt much better. In the first interviews, they
experienced depression, fear, loneliness, suffering, despair, nightmares, feeling of dying
soon, helplessness, unhappiness, compunctious, guilt, feeling inferior, worry, etc. Three
months later, in the second interviews, many respondents recovered and went back to
working hard, having normal social activities (hanging out with friends or dating someone),
learning from the drawback, eating well and having good sleep, feeling happy, energetic,
confident, calm and fresh in mind, having nice dreams, etc.
Wang, in the first interview, said, “I cry and cry…very depressive in mind…I
pretend to be optimistic…but the more I pretend to be happy, the more fear and
loneliness I feel. I am really suffering. ” Three months later, he said, “in the May
holidays, I am very busy and earn quite a lot of money, and then I am quite wild
and hang out with colleagues every day. I feel I am so fulfilled and would think
about nothing. I am so happy…recently I am so energetic to take qualification
167
exams in my job…among two hundred examinees I obtained the second runner
up position. I am so confident that I am appreciated by others, and cared about by
a big group of friends, and supported by family. I feel I am so energetic and
confident…I have my life again and live very well again!”
Qin, in the first interview, said, “after I was just diagnosed, I was in a really very
bad psychological state, I felt the heavens had fallen down and nothing is
important anymore.” He also felt despair and very depressed every day. He said,
“Once I fall asleep I have nightmares, and then I get up and I feel I am really dying
soon. Anyway I get to know my final day.” Three months later, he was very busy
working and dating a man but he had not disclosed his sero positive status yet. He
said, “even though I feel tired, I feel it’s not bad and I can eat what I want and have
a very good sleep at night.” But he also mentioned, “Sometimes I think about my
previous friends or events, and feel a bit lonely at night…I estimate if my life is
more and more fulfilling I will think about these things less.”
Chen, in the first interview, said, “I cry all day in my room. I am so helpless and
lonely. It’s like a dream, really magical. But I feel I owe my family a lot…anyway I
am never happy in my life and I don’t feel anything regrettable…I am very afraid of
responsibility and owing others…that night, when four of us sleep in a bed, I feel I
am inferior to others and I am different from others”. Three months later, he said,
“it’s a matter of mentality. If you are peaceful in mind, nothing will happen…I am
now quite flat/calm and fresh in mind and will not seek this or that man all day long.
I am used to it now…sometimes I have a dream of joining tours to see the world.”
He felt that “the positive effect on me is that I can look at my life from a bigger
angle and a higher position…I feel I know more things than before, such as how to
maintain relationships with others and how to manage my life more rationally and
be reflective about myself.”
Zheng, in the first interview, said, “At that time I didn’t understand this disease, I
felt I had an incurable disease, anyway I will be dying soon. I wanted to talk to my
family, but it would create very big stress for them and I didn’t want to talk to
them. …I worried that once the attack arrives and I die suddenly, my family would
definitely worry.” In the second interview, “Now I do not have such distress and
suffering…(the positive side that HIV brings to me) is I want to do a good job and
earn money…Once the day of curing HIV comes, I still need money to buy the
medication…before I get infected, I did not work so hard.”
168
5.2.2 Resources for recovery
At the time of being informed that they were HIV positive, many respondents cried
or dropped tears. They generally needed someone to talk to and to express their feelings.
Some talked to the health care providers (e.g. CDC staff) or volunteers (e.g. SRW
volunteers) in attendance. After they went home, many of them were anxious, and
presented reactions, such as not getting to sleep, loss of appetite, and were empty in mind.
Many of them talked to their close friends and peers or someone trustworthy. Some of
them talked to some of their family and sought help. Some of them turned to the Internet,
used their fake names, and announced it in chat rooms or qq groups and looked for HIV
positive peers and groups (for example, Feng had this experience). These qq groups and
chat rooms were local or national, and provided respondents a lot of information and
psychological support. Social support is obviously an important external resource.
Those respondents who were optimistic in nature tended to be more active in taking
intentional activities (those cognitive, behavioural and volitional activities which people
choose to do and they require effort), such as normal working, regular exercise, cooking
their favourite food, and taking part in collective activities and outdoor activities. Some
respondents believe that medical science develops very fast and more advanced drugs
will come out which might finally cure HIV/AIDS. This optimism gave them strong power to
deal with suffering and difficulties. Some respondents were taking ART already, and it is
hard to take the drugs for the rest of one’s life. They then said “taking ART is like taking
sugar”, such as Zhu and Zhang. HIV/AIDS made some respondents change their
behaviour and lifestyles, and some respondents looked at it in a positive way that they
changed a lot of their bad habits and became more self-caring and cared about their
families. Therefore, optimism is an important internal resource for recovery.
169
5.2.3 Back to normal functioning
Most respondents experienced negative psychological and mental health outcomes
after newly being diagnosed HIV positive, but most of them were resilient and gradually
became functional again during my study period, such as working normally, recovering
from pain and distress caused by HIV infection, going back to their normal life and enjoying
it, being hopeful for their future and knowing how to live better, and having a stable social
network, even though some may recover faster while others may do so slower. It points out
that resilience is an important factor for respondents to recover from the traumatic
experience of HIV diagnosis.
Most respondents gradually opened up, expressed their emotions, and actively
looked for help after the diagnosis. Jiang disclosed his condition to his boyfriend and cried
sadly in front of him; Feng actively looked for HIV positive peers on a local tongzhi website
to obtain social belonging and information; Yan actively looked for a local grassroots
organization for help. During my fieldwork, I met many respondents who talked to me
about their life stories very openly and in depth. Hei, Jiang, Xu, You, Lv, Qin, Yang, Kong,
Zhou, Wang and Xie were the typical examples who freely talked to me in my in-depth
interviews, and after the interviews they all agreed to have continuous contact with me and
local grassroots organizations, such as the SRW and HPG.
Taking part in intentional activities was another important indicator that showed that
respondents were recovering from the HIV diagnosis socially and psychologically. At the
cognitive level, some respondents intentionally reminded themselves not to be too “yi zhi
xiao chen” (意志消沉 low-spirited/depressed) and urged themselves to change it and to
rebuild their wishes or dreams, such as Zhu and Jiang. Some respondents used the sick
170
role of being HIV positive to release their stress from family obligations, such as marriage
and bearing a child or being a man to send money back to support the family, such as Han,
Qian and Hua. Furthermore some respondents used the circulating public health
discourse/rhetoric to negotiate with moral judgment against PLWH. Some respondents
reinterpreted their experiences of being HIV positive. For example, Ren interpreted his
diagnosis as “wei jiaren shouku”(为家人受苦 suffering for one’s family), and he used
cultural concepts to give positive meaning to his getting infected.
At the action level, some respondents, such as Hua, Jiang, Zhao, Feng, Zhu, and
Zhang actively joined local NGOs or grassroots organizations to provide volunteer services
to people in need. Hei, Fan, Qin, and Jin purposively improved their diet and nutrition so
that they could maintain a good CD4 count. Zhu, Jin, Meng, Wang, Yan and You were
actively looking for love and partners. Zhu, Zhao, Feng and Jiang actively took part in
community activities or outdoor recreational activities. Online chatting with tongzhi peers or
HIV positive peers was a general way that many respondents dealt with their loneliness
and need for a sense of social belonging. QQ groups were the major online resources.
Some QQ groups only cover a dozen people, while some QQ groups have hundreds of
members. For example, the HPG organized four QQ groups and hundreds of PLWH were
connected. XHM was a newly set up HIV positive QQ group and just had around 30
members. Small group activities, such as several friends hanging out or joining KTV or
having dinner together, were also influential in the adjustment process. Sun, Wang, and
Qian were actually a close group, while Zhao, Feng, and Jin were another group. They got
to know each other in HIV positive groups or on the Internet and then developed close
friendships. Another intentional activity was to look for good traditional Chinese medication
as alternative medications to improve their CD4 count or take supplements of ART. Jian,
Zhao, Yang, Jin and Yan regularly did physical exercise or went to gyms.
171
Xie, Qi, Zhou, Kong, Hei, Wu and Xu also used my interviews as an opportunity to
vent what they wanted to confess, since it was difficult for them to look for someone
trustworthy and reliable to talk to. After the interviews, Wu directly asked for my mobile
phone number and he said he wanted to call me when he wants someone to talk to. Later
on, he did call me several times especially when he felt very depressed, and I patiently
listened to what he said and comforted him. Speaking out fully and in depth was a crucial
way for respondents to release and manage their negative emotions.
5.2.4 Post-traumatic growth
Several respondents even experienced some kind of post-traumatic growth. Based
on three models of post-traumatic growth (Janoff-Bulman, 2004), a person can be
regarded as experiencing growth when he (1) learns about himself; (2) psychological
preparedness for possible misfortunes in the future; (3) existential reevaluation, moving
from concerns about the meaning of life (comprehensibility or significance) to the creation
of meaning (i.e. value and worth) in life. Moreover, relationship enhancement, developing
improved views of oneself, and positive changes in life and/or life philosophy are examples
of growth. Some respondents, such as Yang, Jiang, Shen, Chen, Zhao, Feng and Zhou,
can be classified as experiencing growth to different degrees. Another point that needs to
be highlighted is that growth and setback are parallel and switch back and forth, and only
respondents who continued to make effort to deal with setbacks could grow continuously.
Therefore they solved their original psycho-social problems to some degree.
Jiang was a typical case. He set up a boyfriend relationship with a young man after
he disclosed his condition to this man. He said, “After I was diagnosed, we then really
172
decided to set up a relationship, and we have stayed together until now. …If we stay
together for quite a long time, we will then change from lovers into a family. At that time it’s
not just an issue of emotional attachment, it’s an issue of family love. I therefore feel it’s
quite good.” Jiang also enhanced his relationship with his colleagues after he disclosed his
condition to them. He said, “At that time I felt it was impossible to suppress it in my mind
alone. If I didn’t share with others, I really could not bear this reality. I therefore decided to
share it with the friends who can support me most. Later I found more than one friend who
can provide me support. I therefore disclosed my condition to those friends. …the situation
developed in a better direction. For example, they care more about my health. Previously
we would crazily go to bars for fun until two or three o’clock at night. Now they even try to
keep a distance from me when they smoke.” Jiang improved his view of himself. He said,
“Because many things were done by me, no matter I acknowledged it or not, it is me who
planted the seeds.” (It’s learning about himself）Such an HIV diagnosis provided Jiang a
kind of relief from the struggling of getting married to a woman or not and he had totally
given up this idea. He said,”Actually, it’s the lifestyle I always want to pursue and it has
been strengthened in some aspects. It can turn into a positive. …Personally I seldom think
about things in the dark side. Since you have taken this path, you should go as far as
possible to see the bright side.” Jiang experienced some positive changes in life or life
philosophy. He said, “Each time when I took part in outreach activities, especially when I
met someone who refused to use condoms, I would be motivated to perceive stronger
responsibilities (in HIV prevention).” He also felt he had a more enriched life than before.
He felt satisfied and had a positive evaluation of changing his original lifestyle. He said, “If I
just looked for sex, I would not look for a stable boyfriend. …I really want to have a stable
partner because I want to fulfil my emotional needs. Sex is not the most important thing.”
He also described his life target after the diagnosis. He said, “After I was diagnosed HIV
positive, the issue we talked about most was how to reach our expectation in a limited time
173
period. …Personally I am quite ambitious. I think it’s better to make our company listed. My
lowest target is to leave a legacy of RMB2-3 million for my parents’ pension.”
Yang described, “Three months have passed. I feel I want to have a good day every
day (a kind of comprehensibility). It’s actually not a fantasy. I sometimes feel that getting
HIV positive is very bad news at first, but later it can be turned into a positive outcome as I
have become more regular and positive and active (it’s about value and worth)”, “I feel my
previous life was quite promiscuous (Yang learn about himself), and now I have really
calmed down. I consider what to do next and how to have a good life, or how to treat my
family and friends (it’s about reevaluation-comprehensibility and significance). It has been
changed to be a kind of selection, giving up something bad…giving up some bad
habits. …to change my bad dietary habits…to choose something good for my health. …In
terms of living habits, I always stayed up late previously, but now I stay at home. The most
important change is in my work. Previously I muddled along and was dilatory in my work.
Now I am really serious in my work. Today’s things must be finished by today. And I will do
a bit more and let my colleagues feel more comfortable, and let us become closer in our
relationship, with less conflicts. I think it’s an important point.”
Shen said, “Anyway I live one day at a time, and have the day meaningful. Simply
speaking, I treat every day as the last day of my life. …The value of one’s life does
not depend on how long he/she lives; instead it depends on the values and
meanings he/she has created in his/her life. Some people live until 50 or 60 years
old, but they may settle for mediocrity. Some people live for only 20 to 30 years,
but have a brilliant life. …I hope to look for a good job, and reduce my family
burden. Even in the last five to eight years, I would like to do something valuable.”
The case of Shen implied that individuals have the ability to learn from traumatic
experiences and then upgrade themselves spiritually and psychologically.
Chen said, “I learned more things than before. For example, I know how to get
along with others; how to maintain good relationships; how to manage my life
174
more rationally. …Because I keep myself reflective and I do not put all the blame
on someone else’s body. …I would reflect on my own.” Since I lived with Chen and
an experienced volunteer in the SRW for six months during my fieldwork, I can see
that Chen was influenced by me and the volunteer. Gradually Chen would pay
more attention to the comments or views from me and the volunteer. At the
beginning Chen attributed his getting HIV infected to his unhappy early family life. I
had in-depth discussions and sharing with him about his family and growing up in
the formal interviews. He then changed his views. Later, he developed closer
interactions with his family, such as more phone greetings, and he felt his parents
cared about him more than before.
In the cases of Zhao and Feng, both of them actively took part in volunteer work in
a grassroots organization. Their experiences implicated that grassroots
organizations were crucial in helping respondents to recover and grow after the
traumatic of HIV diagnosis. Being altruistic is a clear feature of experiencing
growth. In the case of Zhou, he experienced a lot of positive interaction with his
colleagues and managers in his company. It indicated that general social support
from colleagues and company was also very important for them in adjusting to
their diagnosis and developing growth.
5.2.5 Factors associated with positive mental health outcome
5.2.5.1 Individual factors
Active and positive personalities
Some respondents presented automatically more active and positive responses
after their diagnosis. They looked on the bright side, or encouraged themselves to “face it
positively”, or were optimistic to the treatment, or relied on self-help actively, or actively
looked for help, or returned to their “instinct to live” naturally.
Miao said, “When I knew I got this (HIV), I didn’t feel I was dying soon. I especially
175
looked on the bright side of things…I feel it a very general thing. It doesn’t affect
my life and work. I just feel I need to do one more thing compared with others.
That’s taking drugs regularly”.
Yang said, “After I was diagnosed HIV positive, I felt that since I had chosen this
road, I didn’t think it necessary to think it as being too terrible. …I held an idea that
everything could be possible and I can bear this bottom line. …I felt that it was
nothing and I should face it positively…I felt that homosexuals are not so stupid or
silly, and they are good at looking for organizations.”
Shi said, “I have a very good mentality. I feel HIV is easier to be treated than
diabetes, if I can take the medicine (free ART). Many people now use free
medicine. The result is quite good. A man has taken it for 10 to 20 years and is still
surviving.”
Qi said, “I need to try hard. Everybody needs to be strong. Everybody needs to
improve the resistance…pay attention to food and nutrition… self-help, taking
medicines, and cooperating with doctors.”
Zhao was a peer volunteer, and he met with some HIV positive MSM online who
were actively looking for help. He said, “He didn’t know where to go, and then he
posted many threads online. He said I got infected and I needed help.”
Han said, “The key point is I have a stronger instinct to live. I am afraid of death. I
feel death is a very painful thing.”
Direct confrontation and reinterpretation
Most respondents faced up to their HIV diagnosis directly. Many of them confided
their suffering to someone. Speaking out is the general way that they used to give vent to
their emotions. Some respondents even cried out loud. Some respondents saw the
interviews as opportunities to fully speak about their suffering and give vent to their
emotions.
Hei said, “After I went to consult a psychologist, I became open and generous
psychologically. It may because I confided in others. Anyway, it has happened and
it’s okay for me to pour out.”
Xie said, “many times I have had many innermost thoughts and feelings but I don’t
know who I can talk to. I was just depressed, or oppressed myself, or chatted with
176
somebody on the Internet. Sometimes I went to saunas, not just for giving vent to
my sexual desire, but to chat with others and make myself feel soothed and
comfortable.” After the formal interviews, I sometimes chatted with Xie through qq,
and he typed to me that “I would like to talk to you in the future if I have some
innermost thoughts. I trust you…I treat you as my counselling teacher.”
Shen said, “He (a good friend) seems quite understanding of me, with no
discrimination against me at all. We have known about each other for quite a long
time and have a very good relationship. He said to me, ‘no matter how much I
complain about revenge on society, how selfishness I am, whatever decision I
make, I can totally understand, since you have encountered this situation’. Actually
after I speak out, I would not think about these things anymore.”
“A wake-up call”
Some respondents realized that they missed having their previous real life. The
diagnosis is just like a wake-up call that pushes them to cherish their life left. For some
respondents, the sick role of being HIV positive released their stress from family
obligations.
Han is a typical case and he described, “My family members are few. After my
father died, I was the only male in my family. When I realized my responsibilities
(to my family) and my inabilities, I became very depressed. I felt that I didn’t have
the capability to bring my family more happiness since I need to earn more money
to support my family…I don’t have this ability, no money neither. I have nothing…I
didn’t have the opportunity to go to college…I then have to work for others to make
a living, and I cannot earn money in this way…I felt my future was very dark. I was
very distressed…I am struggling and wondering. I am so helpless. It’s a vicious
circle…I am so frustrated. That’s my life.” Han further explained, “Before I got
infected, I thought there’s no hope, and didn’t treasure (what I have). Now I
cherish every day; cherish my family, work and life; and cherish the things and
people around me. …Because I realize my life is going to end, you have this
feeling that only when you know you are dying soon, you will realize you need to
cherish (what you have). …I really want to have a good life …to enjoy every day,
to nurture my physical body well, to do a good job, and to manage things well
177
around me. Don’t destroy my own life, or waste my body.” Han released greatly
the stress of being the only man in his family. He said, “It’s impossible for me to
think about a long future. …It’s unrealistic… I can only live each day fully…We
never know what we've got till it's gone…’guo hao mei yi tian’ (enjoy every day and
live for the moment).”
You said, “I now only want to enjoy my life, to extend my life for one more day…I
now don’t want to take any risk and just want to have a stable work and life, and to
live each day fully. Because I know I don’t have a long future…I have a simple life
now, going to work at 8 AM, and back home at 6 PM, shopping, and then cooking
what I want to eat, and then watching TV, or browsing the Internet. Sometimes
when I was in a good mood, I went to the plaza to dance after dinner. I got to know
many friendly dancing partners…When I was together with them, I felt a bit
younger.”
Zhao said, “Now what I need is a stable job, a stable life. I cannot be so crazy
searching for partners like the past. …I feel I cherish more of the life I have. I feel I
should enjoy every day. I should be happy every day.”
The phenomenon was also observed by some CDC staff. Staff T said, “Some
PLWH made jokes with me that their quality of life has been improved greatly after
the diagnosis. Because before they knew about getting HIV infected, I didn’t pay
attention to this, and they could do anything they liked, such as staying up late.
After the diagnosis, they said, their life was not long any more’. …In the days left,
they lived each day fully, throwing away any annoyance. They went to do physical
exercise, and had regular work and lives, no staying up late, going hiking or
playing badminton every week. They had a very good life. …Maybe it’s around 6
to 7% of PLWH who are like this. They had a better mentality.”
The two contrasting views on a shorter life expectancy
HIV was regarded as shortening their life expectancy, which made respondents
stressed. However some MSM counteracted their suffering by relief from worrying about
marriage and aging on the other hand.
178
Jiang said, “Actually it’s a kind of extrication. Originally I was struggling whether to
get married (to a woman). Now I have definitely given up this idea. I don’t consider
it anymore. Except my parents, I don’t need to be concerned about anything, since
I don’t have any brothers or sisters. That’s good for me.”
Fan said, “Homosexuals getting AIDS, or MB getting AIDS is not the biggest
punishment by Heaven (God). I feel the biggest punishment by God is to let you
live until 80 or 90 years old, and not let you die, but just let you sit there every day
to see the youth jumping here and there in front of you. Don’t you think it is the
most suffering! Don’t you feel terrible! …First, I don’t have a family and no burden
of children. I don’t need to live for a long time. When I am still fresh and pretty, that
is when I choose to leave or end everything. That’s the biggest happiness for
tongzhi. For men, to die at the age of 60 is quite reasonable. If you are aged 70, no
one dares to fuck you since they worry you may die. Hehe (laughs)! It’s real! …I
feel that is more terrible than AIDS.”
Meng said, “Before I got infected, there were a lot of possibilities for me. But after I
got infected, I can only go this way (can’t go back to heterosexual
marriage). …That’s to work hard to earn money, and then avoid falling into a tight
corner. When I was hospitalized, I met some friends who were also HIV positive.
They were really in a difficult situation.”
Negotiating morality
Becoming HIV infected is generally judged as doing something bad or immoral,
such as being promiscuous and taking drugs. Some respondents tried to negotiate the
moral judgments against PLWH and other misunderstandings. Discourses on love and
care were used to negotiate the mainstream ideology that MSM are also human beings
and they need love and partners, and they were moral not to get married to females.
“Some young men, aged 24 or 25, just graduated, have sex only several times and
also get infected…Moreover, the infection rate in tongzhi circles is very high…I am
not saying that this type of people (MSM) is very ‘luan’ (乱, promiscuous). We
cannot draw this conclusion, because everybody needs care and love. …I never
179
think about getting married to a woman…Even though you live together with her, it
is not love. I feel it is a kind of cheating. That is not a kind of love…finally the one
hurt is the woman…But we are human beings. No love, no care, it is unreasonable.
Therefore, I feel there is nothing wrong to look for friends (partners). It’s because
of my incaution that I got infected in the process of searching for partners.” (Jin)
“Once I disclose my getting HIV infected, others actually don’t care about the issue
of my getting infected or not; instead what they care is that you must do some
deeds that cannot bear the light of day. It’s because of this issue that prohibits
PLWH from being widely accepted by the general population. It is all linked to
taking drugs and unhealthy sexual behaviour that are in the dark side of our life.”
(Jiang)
“They really misunderstand this kind of person. They think that this kind of person
is promiscuous, or in the tongzhi circles. Actually many of them are innocent.
Those people who always have many sex partners or are very promiscuous may
practise very good safe measures. It’s hard to tell. Actually many HIV sufferers are
innocent. …Innocent here means those persons who are not promiscuous but
who are HIV infected. I only had sex with my boyfriend and therefore I had low
consciousness of self-protection…Some people who were promiscuous in their
sexual life are not innocent.” (Qian)
Emotion of hope
Hope is a very positive emotion. For example, the hope of finding new medication
that can combat HIV enabled some respondents to feel hopeful and played an important
role in maintaining their mental health.
Zhu said, “I insisted on taking (ART) for three months, never interrupted it and was
on time. Now the result is quite good. The doctor said that even though we cannot
kill it (HIV), a general testing machine cannot test for it now. It (virus load) is less
than five hundred. …it’s recessive and hard to be tested. It has been locked and
cannot diffuse, in a very low infectivity. I therefore have less stress and feel my life
is still hopeful. Hehe (smiles slightly).”
Fang said, “Basically by taking medicine (ART), it’s general to live for 10 to 20
years. That is no problem. If you do not die of opportunistic infections, or die of
180
incidences, such as car crashes, it’s the same (as general death). In 20 to 30
years, the development of medicine can definitely make some achievements. It’s
therefore not necessary to worry. …I hear there are new medicines coming out this
year, and some in recent years. More and more people pay attention to this
issue. …anyway I don’t worry about that. …I told them I can live until I get
old. …you see, hepatitis B came out several years earlier than AIDS, and now
there are medicines to save people. There should be medicines to save AIDS
(patients) as well”.
Zheng said, “I should work hard to earn money. Once the disease can be cured,
you still need money to buy medicines. …before I got infected, I would not work so
hard.”
Yan said, “Sometimes I think, I embrace an optimistic view of looking at it. I hope
before I die, some medicines that cure it (HIV) can come out.”
5.2.5.2 Interpersonal factor
Activation of intentional activities
Intentional activities played a significant role in psycho-social adjustment and
mental health maintenance among respondents. Peers and friends in community-based
organizations and peer groups can play a significant role to promote or facilitate these
intentional activities. This points to the importance of facilitating respondents to explore or
develop their interests or hobbies as part of their intentional activities. Through these
continuous activities, respondents accumulated new data over time and then rebuilt their
confidence in their life.
Zheng said, “I feel very happy to be together with other volunteers. When we
communicate, there’s no exclusions or discriminations. Their volunteer work
includes distributing condoms and advertisement materials. It’s helping others and
lets others know more about us.” Zheng also joined some outdoor activities, and
he said, “we went hiking and then to pick strawberries. …After that we became
good brothers, polite and warmhearted.”
181
Zhu said, “After I got to know this disease, it’s actually not so terrible. Gradually I
accept myself and then I accept others who are like me (HIV infected) and have a
feeling that one should not discriminate against such people. That’s to look at
some issues in a positive perspective. …anything is decided by ourselves. Others
may provide you some help, but it mainly depends on yourself. If you lose
confidence in yourself, no one can help you”.
Jian said, “I love doing physical exercise. I like body-building. …Because I got a
serious injury, I need to strengthen exercises when I recover gradually. I also need
to strengthen my nutrition.”
Some respondents also mentioned some activities, such as hiking (Zheng, Feng,
Hei), worship to Buddha (Zhang), going to church (Qi), outings (Feng, Jiang), and
KTV and parties (Sun, Zhu).
Drawing on Altruism
Some respondents used HIV positive experiences to help others. Some therefore
had a more enriched and meaningful life; some became stronger; some perceived more
value in their life; and they all experienced happiness when they helped others.
After several months of volunteer work, Zhao said, “I feel it’s fun, killing my spare
time, and I got infected and I don’t want more people to get infected. …I feel my
life is more enriched. And the SRW helped me a lot. And then I met my good friend
Feng.”
Hua said, “I don’t want to be famous (by taking part in volunteer work). I just want
to be happier. I would like to help others if I can. Gradually I spend more time doing
volunteer work and feel it is really helpful for me. At least I learn to be strong from
others. I become tough a lot, otherwise I cannot survive. …I just want to treat
myself and others kindly every day.”
Hei said, “Now I put my QQ in my space. Some people had high-risk sexual
behaviour and wondered whether they were HIV infected, or they had questions or
didn’t know where to have the test, but if they add my QQ, I would tell them what I
know…I then gave guidance to them, helped them contact the CDC. I think I am
infected already, and I want to have a more valuable life. It was transmitted by
others, but I don’t even know who transmitted it to me. I believe many people are
like me. I therefore want to through my own effort let them get a clear
182
understanding of themselves and cherish their own health, and then practise safer
sex, and let them know more about HIV/AIDS…I now do it in my spare time and
chat with them.”
Feng also actively took part in helping other HIV positive peers. He joined the HPG
and became one of the managers in this qq group. He said, “for those newly
infected, I would like to help, chat with them and provide guidance to them.” He
also actively took part in outreach activities in the SRW. I met with him several
times during my fieldwork and he is now an experienced volunteer. He also helped
some migrant HIV positive peers to obtain household registration in Shenzhen and
then applied for free ART.
Miao said “I am very happy to help others. If someone needs to go to hospital
today and I am free, I will bring him there…I would like to be a volunteer. I am very
happy. I feel I really like to help others”
Being accepted by partners/lovers
Having a partner and disclosure or not interact to influence respondents’ mental
health. Some respondents had a partner and they disclosed their condition to their
partners, including sero discordant and sero concordant partners, and then they built up
relationships of mutual support. Having a boyfriend in a context of sero disclosure
appeared to be a very important positive factor to support respondents’ psychological and
mental health.
Jiang said, “I feel my life is more enriched than before. Hehe (laughs
slightly) …sometimes we have some minor quarrels and it’s quite happy. It’s also
good in every aspect. I am really satisfied. The key point is that he (his boyfriend)
is quite good, and it’s really hard to meet with a man like him. If I still had my
previous lifestyle, it would be impossible to meet with him.”
Lv said, “I met with him (his boyfriend) in a sauna in September. In October I told
him I may get AIDS. He didn’t disgust me. He said no problem. I felt, woo, how is it
possible to meet a man like him! …at that time he let me calm down. He brought
me to bars, to play games, to listen to music, and he always chatted with me and
taught me.”
183
Zhao disclosed his condition to his partner who he liked very much, and reminded
him to consistently use condoms. This partner was moved by him and went back
to visit him again.
5.2.5.3 Community-related factors
Social support from community-based organizations
HIV positive groups, MSM grassroots organizations and tongzhi websites provide
significant social support to many respondents, including training, information, mutual help
and services. Most respondents (27/45) took part in HIV positive groups (e.g. grassroots
HIV positive groups, positive qq groups or small support groups). Many respondents felt
closer social belonging, obtained a kind of collective identity of being PLWH, and therefore
got access to more practical information and knowledge of how to manage HIV/AIDS.
Miao said, “Later, I joined the HPG. Many people (PLWH) discussed HIV with me
and then I got to know more about it. Last time, an expert from Beijing arrived and
provided training. I got a clear understanding about it and therefore didn’t feel
especially terrible. …the purpose of setting up our group is that one day when you
are hospitalized, other PLWH would serve you.”
Meng said, “In the positive group, I met around 20 to 30 people…to have fun at the
weekend, or hiking…sometimes I went there to relax. Some experienced ward
mates would like to help. Previously, I went there once every month.”
Jian said, “I feel it’s not necessary to tell others…But in one or two days I can’t
figure it out. Death is approaching. I injured my head, and I felt bigger stress. …I
think it’s better to ask someone who knows about it and then you can calm
down. …At that moment, I got confused and didn’t know what to do and who I can
turn to. I asked Mr. K (the leader of the SRW).”
Tao looked for peers on the Internet. He said, “After being diagnosed, I started to
search online. I met Mr. K in an AIDS forum in a Shenzhen chat room and saw his
qq number on a tongzhi website. And then I added his qq and chatted with
him. …Later I also got to know an AIDS patient. I added him and chatted with him.
184
We both got this disease and he has had it for three years.” Tao firstly disclosed
his condition to his long-term partner and obtained support from him. He said, “He
comforted me to face this reality since I got it…He also searched for it on the
Internet for me and paid attention to treatments.”
Chen obtained support from general volunteers in the SRW. Ping accompanied
him to visit the Shenzhen CDC to have the diagnosed report… Chen also
disclosed his condition to two other volunteers and obtained support from them.
Social support from families
Some respondents (11/45) disclosed their sero positive status to their families, and
four of them (e.g. Zheng, Shi, Zhang and Xie) received a lot of care from their families,
while three of them (e.g. Xu, Hua and Bai) received care from some of their families, and
four of them (e.g. Zhao, Hei, Bai and Peng) were treated indifferently by their families.
Some respondents (e.g. Wang, Feng and Qi) (3/45) lied to their families that they had a
kind of serious disease, such as cancer, and they also received care from their families.
Zhang received care from his family after disclosure. He said, “Because I am very
close to my little sister, was really very distressed and needed a family member to
care about me, I told my little sister.” Later, his elder brother and parents also got
to know about his infection. But his family still cared about him. He said, “my elder
brother wears my clothes…my parents have meals with me and we are not
separate since I don’t have TB. …There’s a girl, I called her sister. I told her all of
my things. She really understands me.”
Xie disclosed his condition to his little brother. He said, “There are four brothers in
my family. I am very close to my little brother. I told my little brother I was infected
with this disease (HIV). …He was very surprised and very sad. But at last he still
supported me. …He told me to live happier and eat better, and to have the life I
should have. He promised to keep it a secret for his whole life and he would not tell
other families. Later I went to S city; he applied for leave for a day to bring me to
play around. I was so moved.”
Shi’s condition was disclosed by a doctor to his wife. He said, “I told her very
clearly about this issue (HIV positive). She still wanted to live with me and she
185
accepted this reality. …Since she didn’t get infected, I wanted her to leave me.
Anyway I should not ruin her future. But she didn’t agree and still insisted on being
with me. …Anyway, she treated me quite well, cooking what I wanted to eat and
cooking soup every day.”
Other respondents also received care from their families. Xu disclosed his
condition to his sisters and his sisters cared about him a lot and tried to look for
good medications for him. Wang lied to his family that there was some problem in
his blood and Feng told his brother that he had cancer, and both of them received
care from their families.
Social support from boss and colleagues
Some respondents (e.g. Feng, Chen and Jiang) (3/45) also received understanding
and care from their boss or colleagues after serostatus disclosure. Some respondents (e.g.
Zhou and Xie) disclosed themselves as getting an incurable disease to their boss or
colleagues and obtained acceptance. The sense of a benevolent world was then
generated.
Feng described, “After I started taking medicine, I always got cold and fever and I
needed to apply for sick leave frequently. It’s ok for one or two days, but it’s not
good if you frequently ask for leave. I therefore disclosed my condition to my boss.
My boss didn’t present anything (unhappy). At that time of suffering, I received
care from my boss that I could be more flexible in my working hours. I am allowed
to go to the office a bit later. My boss said it can avoid the rush hours when I really
suffer. And he allowed me to go home earlier to avoid crowded buses. …I have a
kind boss. But now I want to give up (taking ART). I told my boss I want to give up.
He said I should not give up and I must persist; he told me it would be better after a
while.”
Zhou talked to one of his business suppliers and received care from her. He said,
“After I took medicine, I suffered a lot. Everyone who got AIDS would be in a
psychological slump. I really could not bear it and then I talked to her…She
expressed sympathy for me…she really understood me”. Zhou also received
social and psychological support from his company. He said, “In this period of time,
they (his colleagues and managers) really cared about me. …They would like to
186
spend time with me and listened to me, including my personal life, annoyances in
my work. It made me have a feeling of home, warmth in my heart…I told my
teacher manager that I got an incurable disease and I am very thirsty for
success….She is the head in our department, and she liked spending time
chatting with me. I am just a very humble one under her, and I am really moved.
Each time when I met her, she encouraged me.”
Chen said, “At that time I called three persons. She (one of his colleagues) was
the first one who responded to me. We are similar in terms of personalities, and
we are quite congenial. I told her (I got HIV infected). She cried on the phone. …I
told them (two female friends) everything.”
5.2.5.4 Institutional factors
Effective counselling
Well-managed and information-rich post-test counselling appeared to be effective,
even though these practices were occasional and case specific in the real practices in the
CDC system. Based on very good rapport building, some health care providers can be
perceived as significant others by some respondents and the advice or impressions from
these health care providers had more effect on the respondents.
Shi made a good comment on CDC staff. He said, “Their work is very good, and
they are warm-hearted. When you are diagnosed, they tell you what to do, firstly to
adjust your mentality, and then to provide you some guidance, what you need to
pay attention to, and some protecting measures. All of these are true and it’s a
kind of care.” Shi also viewed Staff N as a significant other and told her everything
about himself.
Jin described, “At that moment, a doctor and a leader from the CDC chatted with
me in a room. …’xxx(Jin’s real name), you are diagnosed HIV positive’. I was
struck dumb. And then they comforted me and chatted with me for almost one
hour…’many people (PLWH) can survive for many years’…’this virus is actually
not easy to transmit’…I feel much better. ”
Hua said, “The doctor directly told me about getting infected…he talked to me for
187
one to two hours. He said, the key is maintaining a good mentality and doing
physical exercise. …he called CDC staff to drive a car to pick me up. I felt they
really cared about me. They didn’t present any discrimination. If they discriminated
against us, we really cannot survive anymore.”
Hei received a lot of help from a CDC staff member. For example, this staff
accompanied him to consult a psychologist and helped him to obtain free ART. Hei
gradually viewed him as a significant other. He said, “at the beginning of my
diagnosis of syphilis I thought quite a while before I decided to talk to Dr. W about
the treatment of syphilis. I feared Dr. W would have some judgment about me. I
feared he may think I had AIDS already and now got syphilis carelessly again. I
feared he may think I am a promiscuous person.”
Religion and the ideology of fate
Religion and the ideology of fate provided some respondents the reason for getting
HIV infected, making them accept the diagnosis, and making them more comfortable
psychologically. Some Buddhist respondents treat the diagnosis as a test from Buddha;
some even obtained altruistic meaning from the worship to Buddha; some reinforced their
self-esteem of being a “good and proper person”.
Jian said, “Recently I experienced quite a lot of trouble, and I got injured. I
therefore redeemed a vow to Buddha. …After the worship I may release
psychologically, a kind of spiritual releasing. …I am not Buddhist, but I have
Buddha in my mind. …I did ask Buddha (why let me get infected) in my mind, quite
devotionally. I feel after I got infected it may be a process, a kind of trial. It might
not show effects in my body for my whole life, or until I am in my 60s or 70s. But I
need to pay more attention to my body. It may be a test to me. I should not
complain to Buddha about anything. I feel it’s my fate, something that is related to
my pre-existing life, in life and after life.”
Shen said, “I would like to do something good. Previously I didn’t worship Buddha,
but now I do…I heard that they went to worship Buddha, and I went as well. I went
there alone sometimes when I wanted to. Honestly speaking I want to worship
Buddha because I want my parents to live better, let them be healthy. I say (to
Buddha) I got this disease (HIV/AIDS), it’s incurable, no way out; just let me
188
undertake all of the diseases they (my parents) need to suffer. …at that time I felt
like having a bit more hope and I felt better.”
Sun said, “It may be predestined, no way out. I have to admit that (getting HIV
infected) is predetermined by Heaven (God). I therefore have a stronger ideology
in this aspect, and learned a lot and have got to know more people (PLWH).”
Zheng said, “I go to Xian Hu Temple to burn incense and worship Buddha with four
HIV positive peers. We made an appointment online. I feel quite good…that’s my
fate, and I have no choice.”
Zhang, an HIV positive peer worker, said among PLWH, many believe in Buddha.
He said, “they wear Buddha pendants or bracelets, go to temples to burn incense.”
He himself also went to Xian Hu to burn incense and he had a conversion
certificate to Buddhism. He also organized a group of PLWH to visit temples and
worship Buddha. He said, “In June, we visited a Guan Yi Temple, and then we
drew for sortilege. Among five persons, only I drew the first pick. Hahaha
(laughing)…they said ‘see, doing good things can allow you to draw the first pick’.
We can obtain psychological harvest through doing good deeds.” And another
respondent, Qi, went to a church to ask for mercy from God.
Chinese concept of filial piety
As presented in the aforementioned paragraphs, the feeling of “dui bu qi fu mu” (对
不起父母 sorry to parents), a presentation of filial piety, is a strong moral interpretation of
getting HIV infected, which usually puts HIV positive MSM into a negative emotional state,
such as feeling guilty. For some respondents, however, it is also a strong power to prohibit
them from committing suicide.
“I am really sorry to my parents…I think if I suddenly die, it’s a big blow to my
parents…If I commit suicide, it’s too bad for my family. They would be very hurt.
Once the police find out the reason is because of AIDS, my parents would have no
place to put their face and could not raise their heads high in the village.” (Shen)
“At that time I thought about suicide. But later I thought how my mother would not
survive if I died. I said to myself I can’t do that, really can’t do that. And therefore I
do not think about it anymore.” (Zhu)
189
5.3 Public health concern of suicidal ideation
Many respondents (16/45) expressed suicidal ideation to different degrees. Some of
them (4/16) had suicidal ideation before being diagnosed HIV positive. The reasons
include suffering too much stress from families, friends and colleagues as a tongzhi; or
being discriminated against; or suffering from loss of love affair; or feeling meaningless
due to having no friends (tongzhi friends/partners).
Ge said, “I accept I am a tongzhi, but the stress is too big, because I was phoned
and pressed (to get married by my family) every day. Friends and colleagues
would ask why they didn’t see me dating girls. …It’s two years ago, because of this,
I could not fall asleep. It might be depression. I was in a very bad mood. I always
thought about committing suicide at that time.”
Fan said, “Previously when I went to school, classmates would tease me like a girl,
and some words were really hurtful and rude. …In the years of middle school, my
psychological stress was very great. I attempted to commit suicide, because I felt I
was very strange and alien. I would sway my hips automatically, just like women
do. My mum asked me not to sway my hips. I felt being humiliated because I didn’t
deliberately sway my hips. It’s my way of walking.”
Xie said, “In 2005, I didn’t have any disease. Just because I was a tongzhi and
didn’t have friends (tongzhi friends/boyfriends), I felt it was meaningless to
live. …When I saw couples, I felt my life was over. At that time I attempted to
commit suicide once. I was saved, and the managers and colleagues in my factory
all went to see me. I felt there was a lot of love in this world and I was really
moved. …I said I should live strongly.”
Qi said, “Here (MSM circles) is too ‘luan’ (messy, promiscuous and chaotic).
There’s true love, but very little. I attempted to commit suicide because of this
(love affair), and got involved with others.”
Qian said, “In 2006, I broke up with him (boyfriend). I was brokenhearted. A desire
of committing suicide was very strong.”
After being diagnosed HIV positive, more respondents expressed suicidal ideation.
The reasons include feeling terrible about the death body caused by AIDS; worrying about
190
the increasing financial burden on their family; not being able to accept their positive result;
being of poor economic status; suffering from other diseases; feeling too stressed;
avoiding suffering terrible symptoms; feeling very disappointed about human mentality.
Feng said, “I don’t want to leave a debt to my families after I die. …I know about
this disease. Even though it can be treated, it’s terrible. When symptoms have
developed, people will become very thin, very terrible. I dare not to imagine. I think
I will commit suicide a bit earlier; at least I can have a better body.”
Tao said, “At the beginning half month, I really thought about suicide. I felt this
disease should not happen in my body and I felt it was far away from me. I never
thought I would get this disease. When hearing ‘ai zi bing’ (AIDS) these words, any
one would feel fear.”
Hei said, “After I was newly diagnosed, I grew red dots on my whole body. I
thought it was an opportunistic infection. I was really in a very bad situation, felt
bad in my body, and could not fall asleep. At that moment I really wanted to die.”
Shen said, “I went to many places to buy sleeping potions and I wanted to commit
suicide. …I felt it was meaningless to live. …fortunately I didn’t know where to buy
what I needed and could not get it. Otherwise I would have died. …I was very grey
and dispirited, just like a ghost. I even searched ‘how to commit suicide painlessly’
on the Internet. …it felt like a kind of obsession; when I saw some cars on the
street, I even wanted to run into them.”
Shi said, “after the doctor announced the result, I wanted to jump from a building to
die. I really could not accept that…I was very upset, and itched to die, by just
buying a bottle of sleeping pills and then leave this world…my wife cried and
pulled me back.”
Ren said, “if you have any general knowledge about AIDS, you will know what will
happen finally (the terrible symptoms). I will give myself a ‘jie tuo’ (解脱 extrication)
in case of necessity.”
Most respondents who reported suicidal ideation in the first interviews did not suffer
from it again in the second interviews and in the later follow up. At the beginning of their
diagnosis, many respondents feared dying of HIV rapidly but three months later in the
second interviews, most of them realized that they would not die immediately, and many of
them had a kind of psychological preparation that they might die of AIDS or its complicating
191
diseases one day. Moreover, more advanced medication in HIV/AIDS treatment or a new
drug to cure HIV is an important hope and strong expectation that supports many
respondents psychologically. Only two respondents still had suicidal ideation, but they
presented more rational interpretations about it.
Xie said, “After the first interview, I felt my psychological stress become less. But I
searched about the life of AIDS patients on the Internet. Many people could not
bear this stress and committed suicide. I feel very disappointed. …I always feel
that the Heaven (God) let me get this disease, so just let me die soon. After I finish
what I need to do, I would choose a way to commit suicide. I may run into cars and
let my family get some compensation. But sometimes another idea occurs to me
that life in this world is still wonderful and long. I feel I should try my best each
day. …Even though many people have committed suicide, some still have a good
life. This may have been arranged by the Heaven (God).”
Shen said, “I wonder what I should do. I would like to get revenge on the one who
transmitted it to me, and then commit suicide. I don’t want to take medicines
anymore. …Sometimes I complain about a lot of things, such as my job or
stress. …Someone told me if we cannot bear it one day, we make an appointment
to commit suicide together. …those peers who are of poor economic status would
have this idea. Those who have good incomes don’t think about suicide.”
Suicidal ideation is a sensitive matter from a mainstream public health perspective.
Three questions are emphasized: whether one plans to commit suicide; when; and how to
do it and with what instruments. It is necessary in some cases, such as Shen who really
tried to buy poison to commit suicide; Shi who almost jumped to his death in the hospital
building but his wife stopped him; Xie who had attempted to commit suicide before. These
respondents were very emotional and agitated at the moment of acknowledging they were
HIV positive. They needed immediate psychological support or psychiatric counselling and
intervention.
For some respondents, moreover, one of the meanings of death was the end of
192
suffering and obtaining ‘jie tuo’ (解脱 extrication, moksa in Buddhism). This thinking created
a feeling of certainty about their future and a feeling that things are still under control.
Death is not just a medical term, which means terrible physical symptoms and
psychological suffering. In a more humanistic perspective, death is a transformation of
being. In traditional Chinese culture, death is a transformation from one world of ‘yang jian’
to another world of ‘yin jian’, and a new “lun hui” (轮回 Sasāra) start. This cultural
interpretation of death made some respondents more peaceful about facing an HIV
positive result. It therefore in turn released their emotions, anxiety or depression. The
aforementioned factor of “religion and ideology of fate” has provided detailed descriptions
of how beliefs in Buddha and Heaven (God) facilitated respondents to accept their
diagnosis, to release their stress, to create meaning, and to persuade them to do good
deeds.
Hei was able to very calmly tell me that he and his HIV positive peers would jump
into the sea together one day if they cannot bear the suffering anymore, because they like
the blue sea. Even though Hei did not dismiss thinking about suicide, a deferred suicidal
ideation greatly reduced his feeling of uncertainty and hopelessness. After releasing these
psychological burdens, he went back to his normal life, actively working, happy with friends
and colleagues, kindly helping other new PLWH, and still seeking love. Hei is not a single
case, and other respondents include Tao, Feng and Shen. Their experiences call for
humanistic enlightening and care in disease and health issues. The open discussion of the
meanings of death facilitate HIV positive MSM to release their emotions and stimulate their
in-depth thinking of life. Some respondents even talked about their more rational view of
death. Chen said, “I am not afraid of death. Death is a natural thing.”
During my fieldwork, I did not see actual services that targeted mental health among
193
HIV positive MSM. The concept of psychological counselling is not emphasized in the CDC
system, and they only provide immediate comfort to some clients who are very emotional.
MSM communities share much more responsibilities in comforting their HIV positive peers,
such as positive qq groups. Chat rooms in tongzhi websites are regarded as open places
for expressing emotions and ideas, since no one really knows about you and the visitors
change very quickly and then no one really remembers you. Many true ideas and thinking
therefore come out from these chat rooms and tongzhi websites. How do they manage
their emotions? This is still a new issue in HIV/AIDS intervention among HIV positive MSM.
The awareness of the importance of emotions and mental health is still very low in health
care systems and MSM communities. And people just feel it normal for HIV positive MSM
to express some negative emotions. Mostly they just rely on self-recovery and self-care.
5.4 Impacts of Psychological and mental health
Impacts of psychological and mental health on sexual risk
Some respondents, such as Ge, Hei and Han, attributed their practices of
unprotected sex with others to their emotions of unfairness, revenge, black mood, grey
and dispirited, weary, and burned out. It has been argued that risky behaviour is seen as a
response to traumatic stressors (Weisaeth, 1995). This will be explored in more depth in
the next chapter on sexual risk.
Impacts of psychological and mental health on health service seeking
Some respondents refused to seek help from the CDC when they were emotional or
in a bad mental health state, such as Zhou and Han. This phenomenon can be confirmed
194
by CDC staff as well. It has been argued that hopelessness after learning of one’s
serostatus may be associated with a delay in seeking care (Raveis, Siegel & Gorey, 1998).
This will be explored in more depth in the next chapter on health service seeking.
5.5 Summary of p sychological and mental health in a modified socio-ecological
model
After being diagnosed HIV positive, most respondents experienced some kind of
psychological or emotional problems. Depressive symptoms and anxiety were largely
experienced. And respondents had to go through the processes of integrating negative
experiences caused by the diagnosis, utilizing internal and external resources to go back
to normal functioning (usually in a period of 3 to 9 months after the diagnosis), and some of
them even achieved growth.
Subjectively speaking, many respondents paid less attention to psychological and
mental health problems, even though they realized they had emotional problems after the
diagnosis. Most of them relied on human resiliency to recover from these traumatic
experiences. Objectively speaking, health care systems in Shenzhen, both formal and
informal systems, pay less attention to psychological and mental health issues among HIV
positive MSM, and most health care providers and peers and volunteers lack systematic
training in managing mental health issues.
Mental health issues of newly diagnosed HIV positive MSM can be evaluated as a
process of adjustment in a modified framework of socio-ecological model. In terms of
social ecology, some factors play a negative role. Biomedical factors, such as limited
professional knowledge and information on HIV/AIDS, ART and its side-effects, and
195
comorbidity, made respondents confused and increased their uncertainty about the future;
and then deteriorated their psychological and mental health status. Problems related to
MSM circles, such as difficulty in looking for partners and narrow social support,
deteriorated. Socio-economic factors, such as conflict with the CDC, financial burden, poor
job and working conditions, and enacted stigma, constrain respondents’ resiliency. But
some other factors play a positive role. Relationship development and maintenance are
crucial, such as maintaining partner relationships after serostatus disclosure and rapport
building in counselling. Multiple levels of acceptance and support, such as peer support,
and support from CBOs, families, bosses and colleagues, are also very important.
In terms of cognition and emotion, the negative factors include HIV/AIDS-related
perception (e.g. perceived constraints due to HIV and frightening images of AIDS patients),
internalized negativities (e.g. internalized homophobia and HIV stigma), internalized
cultural meanings and social norms (e.g. “face”, taboos, and filial piety). The positive
factors include active and optimistic cognition and emotion, “a wake-up call”, optimistic
views on a shorter life expectancy, discourses on love and care, and hope. Cultural
ideology provided the respondents a rationale to deal with the diagnosis. Religion and the
ideology of fate provided the reason for becoming HIV infected, and Chinese culture of
filial piety prohibited respondents from committing suicide.
In terms of actions, negative factors include substance use, and struggling to seek
sex, intimacy and non-disclosure. Positive factors include active and positive personalities
and direct confrontation and reinterpretation, such as actively looking for help, and
developing self-help, and giving vent to their emotions. Through intentional activities (e.g.
helping others) respondents accumulated new data over time and then rebuilt confidence
in their life.
196
5.6 Discussion
5.6.1 The emerging of a syndemic in HIV and s ome psycho-social and cultural
conditions
Mental health problems are more likely to occur when a person is given a diagnosis
of HIV infection, and when physical symptoms develop or worsen, and HIV infection has
been reported to be associated with a broad range of mental health problems, including
emotional reactions, psychiatric disorders and neuropsychiatric syndromes (Catalan,
1999). A study in the US with a representative probability sample of 2,864 adults receiving
care for HIV showed that more than half were clinically diagnosed with a psychiatric
disorder, with major depression (36%) and generalized anxiety disorder (16%) as the most
common diagnoses (Bing et al., 2001). Another study also determined that depression was
the most prevalent presenting problem (58.1% of clients), the most prevalent endorsed
symptom (96.3%), and major depressive disorders were diagnosed in 21.4% of clients
(Berg, Mimiaga & Safren, 2004). In accordance with this finding, in the current study,
emotional reactions, such as distress, shock, anger or regret, were common among these
newly diagnosed HIV positive MSM. And depressive symptoms and anxiety had been
experienced by many respondents.
Psychological and mental health problems of PLWH are also related to other
stressful issues. Psychiatric disorders are more likely to develop in vulnerable individuals
as a result of the interaction between the person, the stressful situation, and the social and
emotional support available, and events with a negative impact appear to be associated
with the development of psychological morbidity in PLWH (Catalan, 1999). Studies showed
that stress has been associated with higher levels of symptoms of depression (see
197
O’Cleirgh & Safren, 2008 for a review), and high rates of post-traumatic stress disorder
(see O’Cleirgh, Hart & James, 2008 for a review) in PLWH. It also emerged in the current
study that stress derived not only from being diagnosed HIV positive but also from
respondents’ life hardship and suffering, such as it being very difficult to look for a stable
partner or lover in MSM circles, encountering boundaries to getting access to free ART,
and suffering from an unstable migrant life.
In some circumstances, other stressful issues may play a more significant role in
influencing PLWH’s psychological and mental health. In a study among HIV positive MSM,
HIV status was not independently associated with major depression, but instead
depression was independently associated with being younger, having a lower income,
recent life stress, passive coping strategies, less social support, sexual problems and less
gay community involvement (Mao et al., 2009). Another study among MSM (21.7% of
respondents were self-reported HIV positive) testified that psychological distress was
associated with drug use, but was not associated with HIV status (Gibbie, Mijch & Hay,
2011). Other studies also identified high levels of depression and suicide in MSM
populations, and the highest correlations were seen between negative effect and suicidal
thinking (Rogers et al., 2003; Sheer et al., 2008). The non-significant relationship between
HIV status and psychological distress, both when comparing HIV positive and negative
MSM on psychological distress scores and in multivariate analysis, is similar to that found
in past research (Mao et al., 2009; Rogers et al., 2003). These studies indicated that
compromised psychological well-being is not necessarily due to HIV status. In line with
these studies, the current study found that some basic psycho-social and cultural factors
still exercise power over MSM populations, regardless of their HIV status. “Face” is an
important Chinese cultural concept, which covers broad issues, such as property, marriage,
maintaining lineage and morality. This is an important reason why some respondents were
198
not afraid of death (e.g. they prepared to end their life one day), but feared being disclosed
as being HIV positive MSM. In this regard, psychological and mental health issues among
HIV positive MSM should not just be treated as an issue related to HIV/AIDS; instead it
should be evaluated in a broader psycho-social and cultural context.
A phenomenon of syndemic indicates that psychological and mental health
problems of PLWH are related to not only HIV/AIDS but also some adverse social
conditions. A syndemic means two or more afflictions, interacting synergistically,
contributing to the excess burden of a disease in a population; for example, HIV risk in the
MSM population is embedded in multiple co-occurring public health problems, including
poor mental health, substance use, violence and victimization, discrimination, and
economic hardship (USCDC, 2008). Beyond disease clustering and interaction, the term
‘syndemic’ also points to the importance of social conditions in disease concentrations,
interactions and consequences; and the interaction of diseases or other health problems
commonly arise because of adverse social conditions (e.g. poverty, stigmatization and
oppressive social relationships) that put socially devalued groups at heightened risk
(Singer et al., 2006). Co-occurring health problems (i.e., the presence of a syndemic
condition) have been argued to drive the HIV epidemic among MSM in the US (Safren et
al., 2010). In the current study, the mental health of HIV positive MSM was not only related
to the HIV/AIDS, but also strongly associated with other psycho-social and cultural
conditions, such as family obligation of marriage, having children to maintain their family
bloodline and earning money to support families, struggling with the powerless status of
being migrants, and suffering from spoiled identities of being HIV positive MSM and stigma
and discrimination.
199
5.6.2 Powerful social and cultural factors associated with mental health
After being diagnosed HIV positive, most respondents suffered psychologically and
mentally. They generally encountered HIV positive stressors. They perceived constraints
due to being HIV positive, which made them feel disabled and worthless; they had limited
information and knowledge of HIV/AIDS progression and management, which made them
uncertain and confused. They suffered from taking ART, side-effects and some comorbidity,
and were physically and psychologically suffered. They had to bear a financial burden
caused by health care spending. Compared with the above HIV positive stressors, there
were some more influential factors that led to their psychological and mental health
problems; more commonly because their original psycho-social problems had been
worsened by their HIV diagnosis.
Social adversities in Migrants’ lives
Social adversities in migrants’ lives have been widely reported, which are the
sources of migrant stress. Long working hours (e.g. 28% over 12 hours per day, and 81%
6 or 7 days per week) among migrant workers has been reported (Li et al., 2007; Wong,
He, Leung, Lau & Chang, 2008). Their living conditions are generally poor: 64% of migrant
workers live in dormitory-style accommodation, sharing with several other workers, since
they cannot afford to pay high rents (Li et al., 2007; Wong, He, Leung, Lau & Chang, 2008).
Migrant workers are subjected to a great deal of exploitation, and quite a number of
migrant workers complain of delays in wage payment, which is used as a strategy by
factories to prevent migrant workers from leaving freely; therefore conflicts over overdue
salaries between employers and migrant workers occur fairly frequently in China (Wong,
He, Leung, Lau & Chang, 2008). In another study, delays and apparently arbitrary
200
reductions in salary payments were described by 61% of migrants; only 19% of the
migrants had any kind of health insurance; and only 26% of migrants were entitled to sick
pay (Li et al., 2007). In China, social welfare benefits are closely tied to one’s residential
status in the household registration system (Hukou system). Migrant workers commonly
experience unpleasant social encounters, such as being shunned, verbally abused, or
looked down upon by urban residents; moreover, migrant workers are largely excluded
from social security (e.g. unemployment benefits) and medical benefits in the cities (Wong,
He, Leung, Lau & Chang, 2008). The Hukou system is now criticized as a major obstacle
to China’s quest to become a modern, first-world nation and global leader (Chan, 2009).
The association between migrant stress and mental health in migrant populations
has been identified. Studies have presented lists of migrant stress issues related to poor
mental health among migrants, such as financial and job-related difficulties, language
barriers, poor living conditions and discrimination (Wong, He, Leung, Lau & Chang, 2008),
interpersonal tensions and conflicts (Wong, He, Leung, Lau & Chang, 2008), obsession,
compulsion, and phobia (Shen et al., 1998), and interpersonal relationship difficulties
(Wong, 2008). Another study showed that the Hukou system, the process of
decentralization and the obscure role of trade unions have contributed to the experience of
marginalization of rural migrant workers in urban cities in China (Wong, Li & Song, 2007).
Migration and urbanization have been argued to contribute to both the spread and the
increasing prevalence of HIV/AIDS and STDs in China (Smith, 2005). A study of migrants
showed that less than 1% across all respondents had received any professional help for
depression or anxiety (Li et al., 2007).
The association between social adversities and psychological and mental health is
also clearly presented in the current study. As migrants, many respondents had
201
experienced discrimination and could not access social welfare (e.g. social insurance and
health care insurance) in Shenzhen. For example, the conditions of free ART and potential
high spending of health care are stressful issues for migrant MSM. Most of them made a
living by working for others and their economic status was comparatively low and unstable.
Many respondents had an obligation or expectation to support their families financially.
Failure to do so usually put them in a stigmatized and shameful situation. Their HIV
positive diagnosis pushed them into a more difficult situation, with worrying issues about
maintaining health, financial security, job stability and social networks. Their HIV positive
diagnosis drives migrant MSM into a downward cycle of poverty, potentially increased
propensity for ill-health, narrower social support and decreased social status.
Psychological or mental health problems, such as experiencing anger, unfairness, upset,
gloomy disposition, depression and stressful have been presented. In this regard, migrant
status is an important source of social adversity and stress that influence psychological
and mental health among HIV positive MSM in Shenzhen.
Social suffering as MSM
MSM populations actually experience a wide range of social suffering. From
Western literature, MSM populations are reported to have increased risks of depressive,
anxiety and substance use disorders (Hirshfielda et al., 2008; Cochran, Sullivan & Mays,
2003; Sandfort, de Graaf, Bijl & Schnabel, 2001). Depression, suicidal ideation, and
risk-taking behaviour among MSM correlated with multiple psychosocial health disparities
(e.g. substance use) and high rates of psychosocial stressors (e.g. verbal, physical and
sexual abuse) (Mustanski, Garofalo, Herrick & Donenberg, 2007). Compared with
heterosexuals, sexual minorities exhibit worse mental health (Fergusson, Horwood, Ridder
& Beautrais, 2005; Mills et al., 2004), more likely reporting a recent suicide attempt
202
(Cochran, Mays, Ortega, Alegria & Takeuchi, 2007), and higher levels of unfair treatment
and psychological distress (Chae & Ayala, 2010). The elevated levels of psychiatric
morbidity and psychological distress in sexual minority populations may be partially
explained by the experience of social hazards associated with sexual minority status,
including institutional and interpersonal forms of discrimination and prejudice, and
instances of verbal and physical violence and harassment (Chae & Yoshikawa, 2008;
Huebner, Rebchook & Kegeles, 2004; Wilson & Yoshikawa, 2004).
The social suffering that MSM experience can be fully described from the current
study. Respondents generally have to hide their sexual identity in the mainstream
heterosexual society. They can only explore their sexual identity and homosexuality in
some MSM venues or circles, and therefore they have to narrow their social spaces when
exploring their sexual interests. It is not easy for them to go through a process of adjusting
to their homosexual or bisexual identities. What is worse, it is not easy to look for partners
in MSM communities, even though many MSM need love and want to have stable partners.
This is because being handsome and rich are the general desires among MSM circles,
especially among sexually active MSM. They care much more about fun and sexual
sensation, and pay less attention to mutual care and support both socially and spiritually. In
other words, they consume their money and physical bodies to satisfy their sexual
interests. Most respondents identified themselves as homosexual, but their views in MSM
circles were quite negative, such as feeling empty, lonely, bored, non-trusting, “luan”
(messy, promiscuous and chaotic), “superficial and feigned”, irresponsibility, and that it
was hard to look for stable partners and love.
For HIV positive MSM, their suffering has deteriorated. In the United Kingdom, the
chronic complex problems associated with living are the biggest burden for PLWH, such as
203
quality of life, social inclusion, re-entry into the labour market, and forming new
relationships (Green & Smith, 2004 for a review). It is hard for HIV positive MSM to
establish significant personal relationships, since those seeking a relationship face issues
of disclosure, self-confidence and fears of rejection. In the current study, after being newly
diagnosed HIV positive, their small social spaces for exploring sexual interests have been
further shrunk, and their psychological and mental health burdens have been increased.
Now they have to hide not only their sexual orientations but also their seropositive status;
and they have to hide themselves not only in the mainstream heterosexual society but also
in MSM communities. Their social spaces have been further narrowed, or their social
networks have to be changed. It becomes more difficult for them to have a lover or stable
partners; their social supports have also been shrunk.
Their HIV positive diagnosis makes them further generate negative attitudes and
consciousness towards themselves and MSM circles/communities, which therefore further
deteriorates their self-esteem, and destroys their confidence in MSM circles. They feel
inferior to others, feel being punished, do not trust others anymore, dislike or even hate
MSM circles/communities. HIV has become a big barrier for them to develop intimacy and
to seek sex, since serostatus disclosure is a tricky issue and being accepted or isolated is
still uncertain. MSM communities have been separated to a certain degree by HIV/AIDS.
HIV positive MSM develop closer identification with the PLWH group, and it has become a
challenge for MSM communities to embrace their HIV positive members harmoniously.
Cultural trauma among contaminated bodies
After becoming HIV infected, cultural traumas are important issues that MSM
generally encounter. “Cultural trauma occurs when members of a collectivity feel they have
204
been subject to a horrendous event that leaves indelible marks upon their group
consciousness, marking their memories forever and changing their future identity in
fundamental and irrevocable ways” (Alexander, 2004:1). The concept of cultural trauma is
to elaborate the problem of negative, dysfunctional, adverse effects on HIV positive MSM
in terms of the cultural tissue of society caused by HIV diagnosis.
As discussed above, many respondents perceived their bodies as contaminated,
such as ‘toxic’, ‘dirty’, and felt inferior to other ‘normal’ (HIV negative) people. A
contaminated body cannot fulfil Chinese family obligations, such as marriage and having
children to maintain family bloodlines. Culturally speaking, marriage to a woman and
producing children (especially male offspring) to maintain their family bloodline is deeply
internalized. Even though most of them accepted their homosexual or bisexual identities,
many of them still planned to get married to a woman one day. An HIV positive diagnosis
confronts their life picture of cultural competency and success, which generates a kind of
cultural trauma for these men. Being HIV positive therefore entails much more suffering
than being a homosexual. Moreover, a contaminated body also cannot fulfil their family
obligation of maintaining “lian” (face), and exercising filial piety. In the Chinese context, lian
(face, moral position), mianzi (face as self-affirming social status) and ren qing (favour) are
moral resources, and reciprocity of face and favour make human networks into gift
relationships in which the exchange of moral capital is emphasized (Kleinman, A. &
Kleinman, J., 1997). When this moral capital is destroyed, cultural traumas are therefore
further deteriorated, which creates negative life attitudes, such as loss of life meaning and
self-esteem. What is worse, being homosexual and HIV positive are regarded as taboos,
and open and full discussion of these issues has been prohibited in Chinese culture. Some
respondents may disclose their seropositive status to somebody, but their communication
and discussion are generally partial and not in depth, which creates barriers for them to
205
release their stress and adjust to their HIV diagnosis.
When HIV goes hand in hand with the low and marginalized status of migrants and
sexual minorities, respondents experienced more complicated and synthesized traumatic
experiences. HIV further narrows their choices in life. HIV plus STDs, and other issues
work together to increase respondents’ traumatic experiences. It can be found that
HIV/AIDS is a trigger that sharpens respondents’ original psycho-social conflicts and
problems, and therefore deteriorates their stressful experiences. HIV infection is more
frequent among people with mental health problems, and mental health problems are
more frequent among people with HIV (Green & Smith, 2004). It is a vicious circle in that
men with psycho-social problems appear to be more at risk of contracting HIV, and those
men who are HIV infected also appear to develop more psychological problems or mental
health problems than those MSM without such diagnosis. For men who are already
managing depression or anxiety disorders, the stress of being diagnosed with HIV and the
multiple stressor of managing HIV may well exacerbate these pre-existing depressive and
anxious tendencies and cause mental health problems. Alternatively, among men who
have no previous history of anxious or depressive symptoms, the stress of HIV may result
in the onset of depressive or anxious symptoms.
Stigma and discrimination
An important issue of stigma and discrimination against HIV positive MSM emerged
in the current study. Stigma was associated with increased levels of anxiety, loneliness,
depressive symptoms, engaging in avoidant coping strategies, and history of suicidal
ideation, and HIV/AIDS stigma exists within the gay community and has a negative effect
on the mental health of HIV positive MSM (Courtenay-Quirk, Wolitski, Parsons & Gomez,
206
2006). Based on the argument of Scambler (1989 as cited in Steward et al., 2008),
respondents experienced three types of stigma. First is enacted stigma. Some
respondents disclose their seropositive status to others, but they are discriminated against,
such as being humiliated, isolated, gossipped about, extorted for money, refused health
services or judged morally concerning how they got infected. Some of them are
discriminated against by HIV/AIDS management regulations when seeking free ART and
related health services, since they are migrants and cannot meet certain criteria to obtain
free ART in Shenzhen. The concept of universally free ART is blocked by household
registration and social insurance in the name of better management and regulations. What
is worse, an HIV diagnosis reduces their opportunities to look for jobs and decreases their
power in negotiating working conditions, and therefore deteriorates their economic status
and living conditions. Most respondents did not disclose their seropositive status publicly
and they didn’t experience enacted stigma, but most of them perceived that once they
made disclosure, they would be discriminated against. This is the felt normative stigma,
which is an important reason behind not disclosing serostatus. It has been argued that
perceived discrimination is associated with a marked decrease in the likelihood of a
resilient outcome (Fleming & Ledogar, 2008). The third type of stigma is internalized
stigma (self-stigma). Some respondents regarded themselves as toxic, inferior, shameful
and bringing bad luck. Moreover, layered stigma should be highlighted among these
migrant HIV positive MSM in Shenzhen, since they are usually judged or labelled immoral
in several aspects, such as sexual orientation, way of getting infected, “mei su zhi” (low
quality/ poor distinction, including low education and having a rural background), poor, and
being publicly perceived as dirty and risky. Even a college-educated white collar worker
(e.g. Jin) had internalized these layered stigmas. For these types of stigma, it can be seen
that stigma and discrimination become more serious after MSM are diagnosed HIV
positive. It is caused by two sources. One is from the unfriendly socio-cultural
207
circumstances, and the other is from internal self-interpretation. In this regard, in order to
address the problem of stigma and discrimination, it is necessary to work on it on both of
these two levels.
5.6.3 Resilience among newly diagnosed HIV positive MSM
The majority of newly diagnosed HIV positive MSM facing blows of psychological
distress achieve a quality of life or level of happiness equivalent to their prior level of
satisfaction and several of them even exceed it. This is because the human psyche has an
impressive ability to withstand severe personal tragedy successfully. It has been shown
that psychological distress specific to receiving an HIV positive diagnosis while still
asymptomatic consists mainly of transient adjustment reactions characterized by
depressed or anxious mood, with a return to baseline emotional functioning within a few
months (DeMarco, Ostrow & DiFranceisco, 1999). The following discussion will present
how newly diagnosed HIV positive MSM adjust to the diagnosis through personal and
environmental levels of resilience.
Personal level of resilience
Resilience is defined commonly as a two-part construct of positive adaptation
despite significant adversity (Luthar, Cicchetti & Becker, 2000). Some studies focused on
determinants of resilience and explored genetic, biological, psychological, family,
community, social and environmental effects (Olsson et al., 2003; Conner, 2006; Cameron,
Ungar & Liebenbeerg, 2007; Norris, Stevens, Pfefferbaum, Wyche & Pfefferbaum, 2008).
Self-esteem and self-confidence function as personality moderators of traumatic
experiences and serve as protective factors (Agaibi & Wilson, 2005 for a review). In the
208
current study, some respondents did present more active and positive character traits such
as looking on the bright side, facing the diagnosis directly, looking for help actively, being
optimistic about the treatment and future, etc.
However, resilience is not a purely individual asset or a character trait; instead it is a
dynamic developmental process in the social dimensions (Luthar & Chichetti, 2000). Rutter
(1990) pointed out that resilience is created when these factors initiate certain processes in
the individual, such as building a positive self-image, reducing the effect of the risk factors,
and breaking a negative cycle so as to open up new opportunities for the individual. In the
current study, the respondents generally negotiated positive self-images since getting HIV
infected is usually judged as doing something bad or immoral. They felt that MSM are also
human beings who need love and care, and their sexual behaviour with the same sex is
moral, since they are not cheating women. They argue that the public should not always
link them to the dark side of society. And many of them are innocent. Through these
individual and collective moral negotiations, they can rebuild their positive self-image.
Another process of resilience, reducing the effect of the risk factors, was initiated
among the current respondents. Maintaining a balanced mentality and a good mood is an
important factor related to better physical health, such as higher CD4 count. In order to
reduce the negative effects of their diagnosis of being HIV positive, respondents in the
current study practised two methods. One was to treat the diagnosis as a “wake-up call”
that reminded them to cherish their life left, throwing away their burdens or stress, and
embracing their own lives every day. “Live for myself” is a voice from their heart. It is
another stress that HIV shortens their life expectancy. However, respondents positively
thought about the tradeoff between shorter life expectancy and worrying about marriage
and aging, and they could enjoy comparative freedom during a shorter period of life.
209
Therefore, the stress of HIV on shorter life expectancy was greatly reduced.
Breaking a negative cycle was also an important process of resilience that
respondents presented in the current study. In order to avoid the vicious circle of HIV
positive-bad mental health-worse physical health, respondents confronted directly their
HIV positive diagnosis. They spoke out and gave vent to their feelings and emotions, and
reinterpreted their experiences. Janoff-Bulman (1992) pointed out that through actions,
even minor ones, survivors are able to see that at least some parts of their world may not
be meaningless and malevolent, and that weakness and worthlessness need not be
general characterizations of the self; through actions, survivors are in essence getting new
data, and over time these data provide an increasing amount of evidence that the world is
not wholly threatening. In the current study, respondents activated intentional activities.
Some intentional activities can serve to directly counter adaptation, and create a
self-sustaining cycle of positive change because of their more dynamic and varying nature
and their capacity to produce a steady stream of positive and rich experiences (Sheldon &
Lyubomirsky, 2004). Volunteer work is a very effective activity, which can provide new data
of social belonging, friendship establishment, physical actions, as well as inner spiritual
resources. Other intentional activities include positive group gatherings, outdoor activities,
physical exercise, parties and so on. Moreover, some studies identified altruism as a factor
associated with resilience (Wilson & Raphael, 1993; Wilson 1995). Leontopoulou (2010)
argued that the relationship between altruism and resilience has not been studied well yet.
In the current study, the association between altruism and resilience was strongly
presented. Those respondents who practised altruism to help others obtained reciprocally
enriched, meaningful and valuable lives as well as happiness, and they became stronger
psychologically and socially.
210
Supportive environments for resilience
It has been argued that a Person-Situation interactional model of resilience is
conceptually critical for the analysis of resilience as a post-traumatic phenomenon (Agaibi
& Wilson, 2005; Zeidner & Endler, 1996). Early work on resilience was concerned with the
individual, but more recently researchers have become interested in resilience as a feature
of whole communities and the concept of community resilience has been enriched
(Fleming & Ledogar, 2008). The process of resilience is specific to a given context—broad
social and environmental conditions. Research has shown that much of what seems to
promote positive adaptation despite adversity does originate outside of the individual—in
the family, community, society, culture and environment (Fleming & Ledogar, 2008).
In the current study, being accepted by lovers or partners after serostatus disclosure
was significantly associated with better psychological and mental health among the
respondents. This is in line with a study that those people who manifest gratitude, interest,
love, and other positive emotions are less distressed emotionally (Agaibi & Wilson, 2005).
Intimacy is a basic human need, and the importance of love/attachment has been long
recognized by developmental psychologists and intimacy is an extremely important
contributor to psychological well-being, with an increase in happiness and satisfaction in
relationships, so there is a decrease in the number of symptoms of depression, anxiety
and self-consciousness (Traupmann & Hatfield, 1981). The need for intimacy is part of a
larger development task—that of achieving a sense of self while establishing close
nurturing relations with others. Secure and healthy attachment increases the potential for
mastering a stressful experience and promotes autonomy (Masten, 2007). HIV positive
MSM in a network of close interpersonal ties can promote general life satisfaction and a
sense of belonging, worth and identity.
211
In the current study, free ART or coming new drugs able to cure HIV brought many
respondents hope, and pushed them back to normal functioning, such as going back to
work to earn money so that they can afford these medications one day. Hope is negatively
associated with depression (Rabkin, Williams, Neugebaer, Remien, & Goetz, 1990; Morris,
1996). Fostering hope in PLWH has been developed as an important nursing intervention
(Cutcliffe, 1995). Kylma, Vehvilainen-Julkunen and Lahdevirta (2001) pointed out that
hope, as a baseline and basic resource in life, is not always conscious; hope does not
decrease, but the awareness of hope alternates. This argument calls for manifesting hope
at the conscious level among newly diagnosed HIV positive MSM.
Effective counselling was reported occasionally in the current study from the emic
perspective in newly diagnosed HIV positive MSM. It provided respondents rich and
practical information in order to manage HIV/AIDS; and warm-hearted care and polite
attitudes facilitated rapport building between health care providers and clients/patients.
Research and theory on social support pointed to relationships with significant others as
an important area of influence on physical health and adjustment (Cohen, 1988). Some
health care providers were regarded as significant others by some HIV positive MSM.
Significant psychological and social support is only possible when a close and reciprocal
relationship is built up between health care providers and clients/patients. It is the quality of
social relationships, rather than their magnitude, that buffers the deleterious effects of
stress (Pakenham, Dadds & Terry, 1994).
Multidimensional social support from community-based organizations, peers,
families and colleagues presented an important supportive environment in the current
study. It is not only about training, information, help and services available, but also about
closer social belonging, collective identities, feeling of being cared for and loved, and
212
confidence about a benevolent world. Rutter (1990) found that organizational or
institutional settings that promote self-esteem and problem-solving behaviour increase the
likelihood of competence, resilience, and the mastery of situations that challenge coping.
Moreover, protective factors are significantly related to positive family and peer
relationships (Agaibi & Wilson, 2005). A study in Hong Kong showed that peer support was
found to exert a strong impact on the mental health of immigrant youths (Wong, 2008)
Culture may act as a resource for resilience in the individuals and communities that
provide their young people with a measure of cultural continuity to promote self-continuity
and protect against suicide. This is what Chandler and Lalonde (1998) called “cultural
continuity” (Lalonde (2005) called it “cultural resilience”). In the current study, religions play
an important role in resilience. Some respondents went to temples or Churches to pay
respect to their Buddha or God, which was actually a process of communication with their
Buddha or God and their inner soul. Through this process, they obtained continuity in
cultural meaning, such as a test from Buddha, or altruistic meaning of suffering for families,
or self-affirmation of being a good person, or obedience to their fate.
5.6.4 Service implications
The above discussion indicates that mental health is not just a personal issue; instead it is
strongly related to the socio-ecological circumstances around respondents. The current
study paid specific attention to life hardships and struggling of HIV positive MSM using a
life history approach. Equal attention was also paid to positive factors associated with
psychological and mental health. Only after both negative and positive factors associated
with psychological and mental health are examined, is a generation of a comprehensive
new approach to address mental health problems among HIV positive MSM then possible.
213
Particular services at the individual and interpersonal level
Advanced pre-test and post-test counselling
Since many newly diagnosed HIV positive MSM encountered psychological and
mental health problems, it is important to identify who are more pessimistic in VCT and
then provide more specific help to them. When a high risk HIV positive MSM is identified,
the CDC can work closely with CBOs and other health institutes to provide personally
tailored services to prevent committing suicide. This strategy is especially important to
prevent newly diagnosed HIV positive MSM from committing suicide. A well-trained and
mentally kind health care provider can significantly help respondents to overcome their
fears or worries, while an inconsiderate one can block or increase difficulties for
respondents to recover. Therefore, advanced pre-test and post-test counselling, which
integrates culturally (MSM subculture included) sensitive counselling skills and HIV/AIDS
and mental health management, should be provided. Health care providers, such as CDC
staff and physicians working on HIV/AIDS, need more systematic training to pay much
more attention to culturally sensitive issues, such as “face”, “taboos”, “filial piety”, religion
and the related ideology of fate, and how to deal with constraints created by HIV.
Experienced scholars and researchers who have conducted social and cultural research
on HIV and MSM issues can provide these trainings.
Cognitive behavioural intervention
Serious mental health problems, such as substance use, committing suicide, major
depression, generalized anxiety disorder, and post-traumatic stress disorder have been
identified among newly diagnosed HIV positive MSM in the current study. Counselling
214
dealing with these problems needs much more professional skills, so it could be very hard
for CDC staff to address this issue. Therefore, the CDC should cooperate closely with
psychiatric hospitals, such as KN Hospital, and a free or partially free programme targeting
mental health problems among newly diagnosed HIV positive MSM can be piloted in
Shenzhen.
A meta-analytic review of controlled trials indicates that cognitive behavioural
interventions (CBIs) are efficacious in improving various psychological states of PLWH
(Crepaz et al., 2008). The practices in Fenway Community Health showed that PLWH who
received training showed a significant improvement in symptoms of depression, anxiety,
anger and stress compared to those who did not receive CBIs. Therefore, in the support of
professional health institutes, such as KN Hospital, CDC staff and physicians can be
trained on how to assess and alter irrational thoughts, and gain adaptive coping skills to
manage and reduce stress. CBIs for PLWH are more likely to achieve success if
interventions incorporate stress management skills training and provide opportunities to
practise skills.
Simultaneously, peer support groups should be organized in KN Hospital or in a
well-developed CBO (e.g. SRW and HPG), where patients (e.g. substance users) can
develop a small mutual support group. This calls for cooperation between health care
institutes and CBOs, since the first party can provide professional training for HIV positive
MSM, and the second party can facilitate the practice of such training in MSM communities.
The effects of CBIs may not last long term, Shenzhen CDC and KN Hospital should work
together and provide HIV positive MSM ongoing or periodic provision of CBIs or other
mental health services to ensure the sustainability of intervention effects.
215
Hotline and online services
Since lack of knowledge and information in managing HIV/AIDS was presented by
respondents, a hotline and online Questions and Answers (Q&A) section therefore should
be set up to provide professional knowledge and information to PLWH, helping them on
how to manage HIV/AIDS and how to manage psychological and mental health issues.
This hotline and online Q&A section can be a cooperation between the CDC, DH Hospital,
CD Hospital and SRW and HPG, and it is an extension of effective counselling. Therefore
the CDC should strengthen their links with CBOs, such as the SRW and HPG. Those
questions asked frequently by PLWH should be collected and published in booklets and/or
on the Internet (e.g. gay websites) with professional answers. This work may need
technical support from academic institutes as well.
Development of information, education and communication (IEC) materials as a way
of activating MSM communities
In order to address the issue of lack of knowledge and information (e.g. HIV/AIDS,
ART and its side effects, comorbidity, etc.) among HIV positive MSM, the CDC should find
diverse ways to conduct advertisements and to distribute knowledge and information.
Currently, Shenzhen CDC has provided small funding in developing IEC materials. In order
to develop MSM subculture sensitive information, education and communication (IEC)
materials, the CDC should work closely with CBOs, such as the SRW and HPG. For
example, IEC materials (songs, dances and poems included) design competitions and
their follow-up award ceremonies should be carried out regularly among MSM
communities. Its effect is more than IEC materials development. More importantly, it can
attract interests from the MSM population and motivate the whole of MSM communities to
216
take part in this HIV/AIDS campaign. Knowledge and information of HIV/AIDS prevention,
treatment and care can therefore be disseminated and accepted discursively among MSM
communities. It is also an active way to push the formulation of collective tongzhi identity
and facilitate MSM community development, and drive tongzhi subculture onto a more
healthy and creative track. One of the ways to deal with collective internalized negativities,
such as homophobia and HIV self-stigma, is to encourage expression through arts, such
as songs, pictures, dancing, poems, VCR (video cassette recording) and movies.
Advocacy to change the social environment
Building up peer support
In order to address negative factors of reduced social support and networks among
HIV positive MSM frightening images, lack of knowledge and information about HIV/AIDS
and its treatments and side-effects, peer support is crucial and it should be regarded as an
important capacity building of MSM communities. It needs to upgrade MSM communities
to embrace their HIV positive members. Compared with professional counselling in health
institutes, peer sharing is an important technique that can be carried out by MSM
communities or CBOs themselves. It can provide very practical and hands on experiences
of managing HIV/AIDS. It can also motivate and disseminate active and optimistic
cognition and emotion among HIV positive MSM and general MSM. For example, an HIV
positive peer can share his experiences from HIV negative to HIV positive in a volunteer
training workshop or a lecture targeting general MSM or other HIV positive MSM. This is
an important way to cultivate mutual care and altruism in MSM circles. It is therefore
important for the governments to provide appropriate funds (e.g. central government
funding and local government supportive funding for HIV/AIDS) to support the
217
development of MSM communities, such as the development of grassroots organizations
and NGOs working on MSM issues.
Building up social support
Since HIV positive MSM are diverse, it is necessary to build up multiple levels of
social support for them. Setting up small peer groups should be encouraged and facilitated
to provide diverse social support to different sub-groups. Sub-groups are small in scale,
but they are very flexible and can provide tailored support to address different needs, and
lead to colourful intentional activities, such as sports activities for those men who are
physically active, outdoor activities for those men who enjoy nature, and cultural events for
those men who are gentle and quiet. CBOs can play an important role in supporting
diverse small support groups to meet the diverse needs of HIV positive MSM. These small
support groups can be qq-based groups, or hobby-based groups. Diverse intentional
activities are then cultivated more effectively, and can strengthen closer social networks
among HIV positive MSM and general MSM.
Care from families is a crucial psycho-social support. MSM communities are
generally separated from their family’s circles, while the health care system normally plays
a role of contacting patients’ families. It is feasible for health care providers to educate and
facilitate patients’ families to provide support and appropriate care to HIV positive MSM.
Formal support from government and health care institutes can be helpful in dealing with
cultural issues of face, taboos, stigma and discriminations against HIV positive MSM and
their families.
218
Promoting volunteer work
Volunteer work has been testified as a very practical and mutually beneficial activity.
As important cooperators with health care institutes, CBOs should share more
responsibilities in facilitating HIV positive MSM to take part in helping others. For example,
in outreach health education, HIV positive MSM can integrate their own experiences to
persuade other MSM to protect themselves. In this process, it is also an important
opportunity to speak out about their experiences and feelings, which is crucial to healing
themselves. Moreover, through such volunteer work, HIV positive MSM can also
accumulate confidence and rebuild their self-esteem, and reinforce their inner desire to be
a well-behaved person.
New policies at the structural level
Policy for legal protection of PLWH
Since job security, privacy protection, and being free from discrimination in health
care service provision are still largely ignored at the social structural level, it is necessary
to strengthen legal practices to protect the human rights of PLWH. Efforts should also be
made to provide universal free ART and reduce patients’ spending (e.g. money and time)
on HIV/AIDS-related health care, such as physical checks and tests, since most MSM are
migrant workers of comparatively low and unstable social economic status. This policy can
be helpful in addressing negative factors of conflict with the CDC, financial burden, and job
and working conditions. This is a national issue and MSM and PLWH collective lobby is
necessary from local to national levels. MSM communities and PLWH populations should
develop closer link with their counterparts in other cities and provinces, so that a bigger
219
voice and more powerful discourdse of legal protection of PLWH can be made nationally.
Policy for legal protection of sexual minorities
Sexual minority stress, such as enacted stigma against homosexuals and
internalized homophobia, is generally presented in the current study. Sexual right is a
human right, and it is equally important to address gay rights in China. Shenzhen as the
first open economic zone in China can be piloted as the first city to acknowledge equal
rights in same sex marriage and job security for sexual minorities, which are the most
important step in dealing with the negative factors of internalized homophobia and taboos,
and prohibitions against homosexuality in Chinese culture. This is a very hard and widely
ignored issue in China. MSM communities not only need to develop stronger link in the
national level, but also need to develop closer collaboration and interaction with
international LGBTQ organizations, academic institutes, human right based international
NGOs, and any gay-friendly companies, organizations and authorities.
220
Chapter 6 Sexual risk
This chapter describes sexual risk and its changes among newly diagnosed HIV
positive MSM. Both negative and positive factors associated with unprotected anal
intercourse (UAI) with commercial and non-commercial sex partners are identified and
organized under a social ecological framework. Several special issues related to sexual
risk behaviour are also explored. Later, a summary, discussion and service implications
are provided.
6.1 Continued unprotected anal intercourse (UAI) after being diagnosed HIV positive
Practising UAI occasionally like the past
In total, 24.44% (11/45) respondents reported practising UAI occasionally after
being diagnosed HIV positive. Six of them practised “0” (being penetrated) in these UAI;
four of them practised “1” (to penetrate); and one of them practised both “0” and “1” in
group sex.
Han is one of the cases. Before being diagnosed HIV positive, he seldom used
condoms when he had sex with others. He explained at that time he was careless
about HIV, and he felt he would not be so unlucky to get infected, and he also felt it
not easy to get infected. He said, “Because I didn’t use condoms since the
beginning, it’s trouble (to use condoms), and I then got infected”. After being
diagnosed HIV positive (in the first interview), he said, “I try to protect myself and
protect him. If I cannot make it, I have no choice, because it’s what you need.” In
the second interview, he said, “(visiting saunas in these three months) two or three
times...had anal sex with six sex partners, and condom use or not was half and
half.” He described, “I went there (sauna), and took a seat. Someone liked me,
and he went to me and touched me…I felt using a condom or not was his own
221
choice…”
Ge is another case. In the first month after newly being diagnosed HIV positive, he
said he had 40 to 50 sex partners. He estimated, ”about one-third were no condom
use…basically they didn’t want to use condoms, or had no condoms at hand, and
didn’t want to get one, and just wanted to do it.” Later he was hospitalized because
he got a complication of pneumonia. But after he got better two months later, he
then hung out to have fun again.
UAI during commercial sex among money boys (MB)
Ten of the respondents were male sex workers, commonly known as money boys
(MB). When they had sex with their commercial partners (clients), they practised UAI
occasionally because their clients did not want to use condoms or threw condoms away
secretly when they were having anal intercourse.
Fan said he would remind his clients to use condoms three times, and then he
would accept no condom.
Lv occasionally accepted no condoms with two clients who insisted on using no
condoms.
Dou continued using no condoms with several regular clients who had not used
condoms previously.
Pan reported a client using a condom in anal intercourse at the beginning, and he
was penetrated. But when they finished sex he found no condom.
6.2 Changes in practising UAI during the study period
Relapses to UAI
Some respondents initially used condoms or resorted to oral sex and masturbation,
but relapsed to non-condom use later. There are different reasons. Some practised UAI or
not depending on their sex partners; some deliberately transmitted HIV to his partner in
222
order to ‘possess’ his partner for his whole life; and some practised UAI after consuming
alcohol.
Xie is a typical case. In the first interview, he reported rejecting anal sex and
practising masturbation, but still accepted oral sex. He described, “In T Sauna,
(after being diagnosed HIV positive) I fell asleep till midnight, and someone
sucked my dick. I wanted to reject him, but suddenly I felt quite ‘shuang’ (爽 love
freedom/very comfortable). I then didn’t reject him. But he wanted to do ‘1’ and ‘0’
(anal sex). I told him that I was too tired and I didn’t want to do it. Because I
realized my stress (of being HIV positive), I therefore rejected him. We did 69 (oral
sex), but I didn’t do it for him, and only he did it for me.” He then provided another
experience that “an Internet friend went to my home, but we didn’t do (anal sex).
We performed mutual touching and masturbation.” He also liked to visit tongzhi
saunas. He said, “In Y Sauna, I went to the steaming room. Some men touched
each other, and someone sucked my dick without a condom.” He then
summarized in the last two months “I had sex four or five times. Generally I
masturbated myself to control (my sexual behaviour with others).” In the second
interview, Xie admitted that in the past three months, he practised UAI every
month. He described, “In July, in T Sauna, an acquaintance met up with me and
pulled me into a room. He used ‘you’ (油 lubricant), but no condom. After finishing
sex, we chatted for a while and went to have a shower. In August, in K Sauna, at
the beginning we used a condom. But later he said it was uncomfortable and he
then took the condom off. In September, one man was a Taiwanese, aged above
40…He sucked me, very comfortable. And then he wanted to penetrate me.
Because there was no condom in the room (a sauna room), and it was far to go to
the first floor to get one. It has three floors and we were on the third floor. We then
didn’t use a condom to have sex. After we finished, we took a shower.”
Lv used condoms in anal sex with his boyfriend at the beginning, but later he
deliberately used no condoms with his boyfriend. He believed that his boyfriend
was infected as well and used no condoms anymore. He said, “Except my
boyfriend, we haven’t used a condom until now. I almost always used condoms
with others…my boyfriend got infected as well. I was so selfish at that time.
Because his family forced him to get married and I wanted to have him with me for
my whole life, I suddenly didn’t use condoms with him and made him get infected.”
Yan is a special case. He used condoms after being diagnosed HIV positive. But
223
once when he drank some alcohol and slept with a boy, he got a hard on and
penetrated this boy without a condom.
Increased frequency of condom use during anal sex during the study period
Some respondents practised UAI after newly being diagnosed HIV positive, but
later they changed to using condoms consistently with sex partners. The following are the
cases. Some disclosed his HIV positive status to his sex partner; some left his previous
partner and looked for a new sero-concordant one who accepted condom use; and some
met a partner he really liked.
Zhu tried to persuade his boyfriend to use condoms and at the time he did not
disclose to his boyfriend his HIV positive status. But his boyfriend did not like using
a condom and they practised unprotected anal sex several times. Later, Zhu
disclosed to his boyfriend his seropositive status and they then used condoms.
Jin had similar experiences with Zhu since his boyfriend did not like to use
condoms as well, and he did not disclose his condition to this boyfriend. After two
occasions of anal sex without a condom, Jin left this man. Later he had a
sero-concordant partner and they used condoms when they had sex.
Hei never used condoms with a sex partner he did not like. But later when he met
a young man he liked, he actively used condoms when they had sex.
6.3 Factors associated with UAI with non-commercial sex partners
Some respondents reported using no condom in anal sex in some circumstances.
The presentation of the factors is organized by using a social ecological framework.
224
6.3.1 Individual factors
Emotional and psychological factors
Many respondents expressed emotions such as anger or revenge after being
diagnosed HIV positive. These emotions may be caused by uncertainty about who
transmitted HIV to them, feelings of unfairness and imbalance, psychological suffering
(depression) or negative life attitudes. Even though some respondents did not directly
attribute their UAI to emotional factors in my interviews, I could still feel their emotions
based on our interactions.
Ge described, “I also don’t know who transmitted the virus to me. If someone likes
me and is not afraid, just come to me!...actually, when I was just diagnosed HIV
positive, I had an idea that the more I transmitted HIV to others the better, I don’t
care, it is better to transmit (HIV) all over the world since I am (HIV positive)
already. Nothing to fear.” “Three or four months after I tested HIV positive, actually
my body also wanted to (have sex), but I seemed to have another feeling of
transmitting the virus to others. Anyway, both of them exist.”
Hei said, “Shortly after being diagnosed HIV positive, I had some problems. I
became very ‘di luo’ (低落 moody and despair). I didn’t care since I was going to
die.”
Han said, “I was very ‘tui fei’ (颓废 grey and dispirited) at the beginning and totally
in a ‘wei mi’ (萎靡 weary and dispirited) situation.”
Discussions with health care providers, such as CDC staff, justified the severity of
emotional and psychological problems among HIV positive MSM.
Staff Z said, “We are always complained about by some patients. Someone even
threatened me. One time a patient tried to use a chair to hit me. I was really
frightened.”
Staff D said, “I felt that they were stricken seriously in the mind after being newly
225
diagnosed HIV positive.”
Staff C said, “It’s really difficult to conduct post-test counselling. Some got numb
after they received a positive result; some wanted to jump from the building; some
wanted to be alone for a while. There’s many different types…I felt the suicide rate
among HIV positive MSM was quite high.”
Staff X said, “Many people deliberately transmitted HIV to others, because human
beings have a kind of mentality that I am afraid and I hope many people are with
me (also HIV positive).”
Misconceptions and risk interpretation
Some respondents perceived a low risk of HIV transmission from “0” (the man who
is penetrated) to “1” (the man who performs penetration).
Jin is a typical case. A man penetrated Jin twice in one night. Jin explained that
this penetration was very short and only last for about one minute since this man
performed premature ejaculation, and he performed “0”, being penetrated, as a
strategy to avoid transmitting HIV to his partner.
Zhu and Lv shared this perception as well.
A misconception existed that being HIV positive can be “zhuan yin” (转阴 changed
to be negative) by taking ART or Traditional Chinese Medicine (TCM). This terminology is
adopted from the knowledge of hepatitis B treatment, but actually it is not appropriate in
HIV/AIDS treatment. When their CD4 count is relatively high and their virus load is low,
they interpret themselves as being at lower risk of transmission. It is possible that the risk
becomes lower but it is a dangerous interpretation of risk. The respondent (Zhu) did not
attribute his behaviour of UAI to this misconception. He said that he did not think too much
when practising UAI with his boyfriend. But he also emphasized that he really loved his
boyfriend. His conflict behaviour implicated that the misconception of “zhuan yin” needs
attention since it could unconsciously provide a rationale for this behaviour. And the
226
following quote from Kong aims to support the argument that the misconception of “zhuan
yin” needs more attention as well in understanding UAI among these HIV positive MSM.
Zhu described, “Last month, in May, I went back to be retested. My virus load
dropped dramatically, and basically it was less than 500. General instruments
cannot test it. That’s ‘zhuan yin’. It’s not positive, and it belongs to negative, that’s
recessive. The virus has been locked, even though it cannot be killed yet. But its
infectivity is very low, and it cannot be lubricated. Simply speaking, you cannot kill
it, but it cannot spread out either. …My CD4 count is very high now. It should be
above 600. Previously it was lower than 300. I feel less stressful now and it’s still
hopeful. Hehe (smiles slightly).”
Kong did not report practising UAI, but he also had a misconception of “zhuan yin”.
He said, “I heard about a kind of Traditional Chinese Medicine (TCM), named Ai Di
Kang. It can significantly reduce virus load. But it’s not to say that AIDS is cured.
The test result is still positive. But it can increase the CD4 count. One person used
it. His CD4 count was only 300. But after he finished three courses of treatment,
his CD4 count increased to 5 or 600. There was no relapse and no reduction in
CD4 count, and it’s not like the medicine (ART) that once you stop taking it,
serious results would occur.” “There’s a clinical patient, using Ai Di Kang for one or
two years. He really ‘zhuan yin’ (changed to be negative). He tested negative. But I
don’t know whether it’s true or not. But I am sure that after he took Ai Di Kang, his
CD4 count increased, and there was no side-effect…I don’t expect it can make me
‘zhuan yin’. I hope it can increase my CD4 count, so that I don’t have
complications.”
Nothing to lose after becoming HIV positive
After becoming HIV infected, some respondents felt that there was nothing to lose
or nothing worse after getting HIV infected. They did not perceive that other diseases
mattered. And they did not have any idea of the risk from other viruses or diseases.
Han said, “I feel that in the whole process of our life, the most serious issue is that
227
once infected I cannot be cured. Other issues don’t matter, except AIDS.”
Xie said, “I felt no problem about getting infected with syphilis, because it can be
cured. I saw a public welfare advertisement in T Sauna. To treat syphilis just needs
three injections, and it costs not more than RMB200. I therefore didn’t feel any
stress.”
Erectile dysfunction as a barrier
Some respondents mentioned erectile dysfunction as an obstacle to condom use
based on their own practices or the experiences of their sex partners.
Xie said, “I have a problem. When I perform ‘1’ (to penetrate), if I use condoms, my
erection will soften with time, and I feel very uncomfortable.”
Qin did not report practising UAI with his partners. But he shared his experience of
meeting with a casual partner who had erectile dysfunction. He said, “I found that
his penis got very soft once he wore a condom. It’s no way for him to get an
erection. It’s very hard for him to make love (when using a condom).”
Substance use
Two respondents mentioned substance use as a reason for no condom use. One
took Methamphetamine in a drug group, and another one consumed alcohol when hanging
out with friends.
Lv generally took drugs with a group of friends in MSM circles. They usually used
Methamphetamine, and no condom would be used if they had sex after taking
Methamphetamine.
Wu was another respondent who used Methamphetamine, even though he did not
mention that he did not use condoms with partners after taking Methamphetamine.
But he was actually closely connected to this drug group since he sold drugs.
Actually, Lv and Wu were in the same drug group.
Yan was a case of alcohol consumption. Yan got to know a boy in a sauna for
228
about 20 days. One night three friends of his hung out and drank for fun. That
night, three of them slept in a bed. Yan said, “After drinking, I used no condom and
penetrated him (the boy), but I did not ejaculate. Maybe I just penetrated a little bit.
I was ‘yun huhu’ (晕乎乎的 dizzy) and ‘mimi huhu’ (迷迷糊糊的 dopey), and quite
passionate. Later I controlled myself. I did have this impulse, but I think I should
not hurt others and I did not ejaculate.” And then he stopped penetration.
6.3.2 Interpersonal factors
Partners refusing condom use and non-serostatus disclosure
It is a commonly reported reason for non-condom use that sex partners did not want
to use condoms and these respondents did not disclose their HIV positive status to their
sex partners. It has been a usual practice to remind partners to use a condom first, and if
they insist on using no condom, they then do not have responsibility or guilt due to using
no condom.
After becoming HIV positive, Zhu met a new boyfriend and started to develop a
relationship. He dared not disclose his seropositive status to this man. When they
had sex, this man did not like using condoms. Zhu tried to negotiate but this man
asked “do you have diseases? Why bother?” Zhu was scared and said, “No, it is
just for safety.” And then they had anal sex without a condom.
Xie said, “I will remind him to use condoms when we have sex. If he doesn’t use
condoms, it is impossible for me to disclose (my seropositive status). What I can
do is pray for him.”
Ge said, “basically it is them (sex partners) who didn’t want to use (condoms), or
there was no condom at hand and we didn’t want to bother to get one, just do it.”
It is the partner’s responsibility to protect himself not mine
For some respondents, selfishness was seen as human nature, and protection was
229
regarded as a personal responsibility. They used it to justify their lack of condom use with
sex partners.
There were several times that Zhu had sex with his boyfriend without using
condoms. When there were condoms at home they used them, but when no
condom was at hand, they did not use one. Zhu explained, “humans are selfish, no
matter how much I love him.”
Han said, “I feel that using condoms or not is a personal choice. Using condoms
means that he pays attention to safety. Using no condoms means that he doesn’t
care about his safety. I will not say anything, because I do not have this
responsibility. It’s yours.”
Fear of losing partners
Fear of losing partners or urge to build up a relationship reduced respondents’
agency in serostatus disclosure and condom use. Sometimes it even pushed some
respondents to deliberately not use condoms in order to infect their boyfriends and
expected to be with their boyfriend forever.
Lv said, “I am selfish…his family forced him to get married…I didn’t want him to
get married, I wanted to have him with me for my whole life…I deliberately used no
condoms when I had sex with him and made him get infected.”
Jin mentioned that a man approached him and he wanted to develop a
relationship with him. But this man did not like using condoms. The first time they
had sex, this man said that there was no condom at home. Jin said “at that time I
was not strong enough to insist on using a condom, because he would suspect me
(of being HIV positive). I was very conflicted in mind, wanting to and not wanting to
have sex.” In order to build up relationships, Jin could not disclose his seropositive
status. Later, this man penetrated him twice without using a condom that night.
230
6.3.3 Community-based factors
Culture on condom use in a Tongzhi sauna setting
Peer influence over no condom use is strong in tongzhi saunas. Some respondents
reported having direct experiences of no condom use and witnessing many men not using
condoms in tongzhi saunas. The physical environment of a tongzhi sauna is crucial since it
is generally dark and sex partners are not in view. It is therefore easy to generate a feeling
of escaping social surveillance and being able to do whatever you want. Even though
tongzhi saunas provide free condoms and lubricants, the way of distribution is need of
improvement. During my fieldwork, some tongzhi saunas only put free condoms and
lubricant on the counters. Some clients might not go back to the counters to take the
condoms or lubricant when going to have sex inside a dark room or a steaming room.
Moreover, the interaction in tongzhi saunas is sex oriented and on an instant partner basis;
some men would rather have unprotected sex immediately when they meet appropriate
partners since these partners may go somewhere else or are approached by others. In this
special circumstance, no condom use has been normalized to some degree.
Xie said, “In saunas, sometimes safe measures are not well practised. Sometimes
at midnight when you are sleeping, someone sucks your dick, with no condom,
and then you feel very comfortable. In the steaming room, some men played with
others’ private parts, and someone sucked my dick, with no condom
use…someone pulled me to penetrate him, using no condom at all. After sex, we
went to wash. Someone was penetrated by several men.”
After being diagnosed HIV positive Han only had sex in saunas as they let him
forget his seropositive status and made him feel less stressed over having sex
with others. He said, “They do not intentionally protect themselves. That’s a
lot! …Many men have oral sex…several men have sex together, with no condoms
at all.” Between the two interviews, there were three months. Han visited saunas
231
three times and had sex with five to six men in saunas and about half of them used
no condoms. He said “I don’t care whether they use condoms or not. ‘Wu suo wei’
(无所谓 indifferent for me)”.
Ge said, “For many men, even though I didn’t ask for any condoms, they didn’t use
condoms either. They went to saunas which are actually very ‘luan’ (physically
chaotic and sexually promiscuous), the most ‘’luan’ places. …Probably more than
ten (partners) used no condoms…basically they used no condoms. Or there were
no condoms on hand and they didn’t want to take it. …sometimes when half way
through penetration, some men threw away the condoms
because the lubricant
which saunas provided was just a small bag… If the time of penetration is longer,
one bag of lubricant is not enough. They may feel dry and uncomfortable.”
Tao didn’t report UAI but he also said, “Condoms are available in saunas. But I find
many men inside…if ten men are inside, it means that six to seven men are not
using condoms.”
Tongzhi saunas are a special sexual space where MSM can release their stress
through having sex, such as working stress, life stress, family stress or stress of being HIV
positive. Some respondents therefore had sex mainly in tongzhi saunas where they could
forget their seropositive status temporarily.
Han said, “Many of them have fun in saunas. It’s just a kind of physical enjoyment.
If only you agree, it (having sex) will happen…. It’s very dark in sauna rooms. No
one knows about each other. It’s just for sex. After having fun, they will go home
and cannot identify their partners. ” He said, “I may forget my identity (HIV
positive), and forget my stress.”
MSM are also free from their socio-economic background when they visit tongzhi
saunas since what they are looking for is just sex and fun. After taking off their clothes,
their physical bodies play a major role.
Xie said, “(In saunas) there’s any kind of men. No matter what social identities
they are, they are the same. I got to know civil servants, TV hosts, newspaper
reporters and so on.”
232
Yan is another case. After work, he had a drink with colleagues and then went to
tongzhi saunas and had sex there. During my fieldwork, I visited different tongzhi
saunas. There was a kind of tongzhi sauna targeted specifically at white-collar
workers. I met some white-collar workers visiting a tongzhi sauna after work.
Comparative moral judgment—“they deserve to be punished”
Some of the respondents presented clear moral judgment against specific sexual
behaviour, such as being promiscuous (having multiple sex partners), swallowing semen
and having oral sex or group sex. HIV is regarded as a kind of punishment and those men
who did something bad are regarded as deserving to be punished. Some respondents
compared their behaviour with that of their partners and came up with a rationale that ‘I
practised some bad behaviour and therefore I got HIV infected; when you (partners)
conduct such behaviour, you deserve to get it as well’. This is why sex partners’
carelessness in not protecting themselves stimulates some HIV positive MSM to practise
unsafe sex.
Hei said, “He (a sex partner) said he has no feeling if using condoms so he doesn’t
use condoms. I think, when I had sex with him in 2008, he swallowed semen.
When he had sex with others, he definitely used no condoms and swallowed
semen. I think, anyhow, I have been infected. If he has not been infected, he will
get infected sooner or later. I therefore used no condoms and ejaculated semen
into his body…Later he sent me a message through qq that he had been
diagnosed HIV positive.” “I hate to see those who are sexually promiscuous,
swallow semen, like playing 69 and like ‘qun pi’ (群劈 group sex). If I meet with this
kind of person and have sex, I definitely use no condoms. I will definitely transmit
(HIV) to them deliberately and let them realize that you may be lucky one time but
you will not the second time. ”
Ge said, “One time, I got to know them on the Internet. He wanted 3P (three men
having groups sex). I said if you want to play 3P, we don’t use condoms; if you use
condoms, then no 3P. …I said if you use condoms, I will be not comfortable and
suffer losses…. I think since you guys want to play 3P, I will then transmit the virus
233
to two persons at the same time. Hehe (smiles slightly)…generally I did not
deliberately transmit it to others. This was the only time.”
Xie said, “If I use no condoms with others, I feel a kind of evil. But I also didn’t think
that I had so bad luck, and only after one time (of unprotected sex) I got infected”.
He always complained “Heaven (God) is not fair”, and later he relapsed to UAI
with partners.
Kong did not report using no condoms with partners. But he also expressed a kind
of moral judgment among partners, “I would think in this way that I should not hurt
good persons and I can only punish bad guys.” A man approached Kong and
visited his home. Kong did not have sex with him that day and this man
immediately turned his attentions to Kong’s housemate. Kong got angry and
thought “I really should punish (transmit HIV to) you” next time.
Ping, a volunteer, also expressed a kind of moral judgment during my fieldwork.
Chen, Ping and I shared an apartment. One night, Chen came back with a man
and they slept together that night. The next morning, Chen said this man stole all
of the money in his wallet and left early in the morning. We discussed this man and
Ping said “I should really have told Chen to transmit (HIV) to him last night.”
6.3.4 Institutional factors
Lack of effec tive law enforcement and perceived difficulty in tracing transmission
route
The “Regulations on the Prevention and Treatment of AIDS” was promulgated by
the State Council on 29th January 2006, and it is presented in Article 62 that “HIV positive
persons or AIDS patients who deliberately transmit HIV to others, according to the law,
shall bear liability for civil compensation, or if a crime is constituted, criminal liability shall
be investigated.” Respondents were informed formally of their responsibility not to transmit
HIV to others when they were newly diagnosed and asked to fill in “the Informing Letter for
the HIV Positive Result”. And peer workers interpreted it as a “legal responsibility” of not
transmitting the virus to others. A senior CDC staff member mentioned that evidence can
234
be obtained through taking tests to identify who has transmitted HIV to his partners. Some
respondents still did not treat it seriously, because they saw no way of identifying how the
virus is transmitted from one man to another. And no such case of malicious HIV
transmission has been reported of being prosecuted. The document on “not transmitting
HIV to others deliberately” was therefore regarded as a useless scrap of paper.
In March 2011, after Ge was diagnosed HIV positive, he wanted so much to have
sex with others. He estimated that he had sex with about 40-50 men this month,
and more than 10 of them used no condoms. He said, “If they used no condoms, it
was ok with me. If they used condoms, I used condoms. I did not deliberately
transmit the disease to others.” “If they have unprotected sex with me, they can do
the same with others. How can you make sure it’s me (who transmitted HIV to you),
can you! I don’t worry about this issue. What can you rely on to prove it’s me?
Even if I transmit it to you, you don’t know at that moment yet, since you cannot
test it now. You can’t make it in such a short time. Moreover, your life is so ‘luan’,
who knows who transmitted it to you! I even don’t know who transmitted it to me.
How can you attribute it to me! I don’t worry about this issue (being identified as
transmitting HIV to others).”
Zhang, a positive peer worker, emphasized the “legal responsibility” of not
transmitting HIV to others and explained it to other PLWH. But he didn’t provide
any practical case where someone was prosecuted for transmitting HIV to others
deliberately.
Qian said, “If you want to investigate somebody, you cannot do that, and you don’t
know who transmitted it to you. You had sex with others and also no condom was
used, and you cannot make sure which man transmitted it to you, right!”
During my fieldwork, a CDC staff member chatted with me in a tongzhi bar and
said that when they conduct HIV tests it can be identified through tests if one man
transmitted HIV to another. But up to the end of my fieldwork no such case had
been reported.
6.4 UAI with commercial sex partners
The influence of social economic factors on sexual risk presented clearer in Money
235
Boys (MB). The following are four typical cases among MB.
Poorer economic status
In the following case of Fan, it can be seen that some older MBs of poorer economic
status find their power reduces when negotiating condom use with their clients. Moreover,
they also suffer emotional or psychological problems that may push them to use no
condom, but their understanding of cross-infection pushes them back to rational behaviour
of using condoms to protect themselves from infecting other diseases.
Fan said, “Previously, it was a kind of feeling of having been wronged and a rash
reaction, and it was also a kind of emotion for revenge. When I had sex with my
clients, I would remind them to use condoms three times. If they still didn’t want to
use condoms, I would then use no condoms. But now I know about cross-infection
if no condom is used. It’s quite painful and involves a lot of suffering. I now firmly
require condom use, because I am afraid of getting infected again.” However, he
further expressed his difficulty that “clients are for the flesh, and I am for money…I
have no choice, you know because my business is not good and so many people
want to sell (their flesh). Those who are born after 1980 give us (who are born
before 1980) a hard time and our clients are decreasing obviously day by day.
Even those who are born after 1990 are joining (the sex work). When you don’t
have money, can you choose clients? If no (clients), you don’t have money.”
Conflicts in making decisions on condom use
In the following case of Lv, he agreed to two clients using no condoms because he
was moved by these clients on one hand, and felt a kind of revenge on the other hand.
Moreover, he also evaluated their clients since he did not want to get infected by other
diseases. Clients’ wife, children, house, and car were perceived as safety indicators. He
also had the perception of low risk in HIV transmission from “0” to “1”. This case highlights
236
the complexities of interaction and risk evaluation between clients and MB in negotiating
condom use, especially for young MB.
Lv said: “I had two clients who asked for no condoms. I then made a big decision
to obey them. I performed 0. And then I always feel that I have a kind of mentality
for revenge.” Lv explained, “There were four clients asking for no condom use, but
I just accepted two of them.” Lv further described that “both of us agreed to use no
condoms. I asked ‘brother, don’t you fear I may have diseases?’ He said ‘I don’t
fear and I will therefore use no condom with you to make love. If I have diseases,
how can I transmit to such a lovely boy like you. That’s to kill a person.’ After
hearing this brother’s words, I did obey him in my mind. A second client also asked
for no condom use. I asked ‘don’t you fear I may have diseases?’ He said ‘I don’t
fear.’ I insisted ‘we still need to use condoms.’ He said ‘I really cannot get used to
condoms.’ I still explained I am in contact with clients every day, but this client still
insisted on using no condoms…Because S city is not like GZ and SZ, it doesn’t
have gay venues. They may be difficult to look for 419 (one night stand). And I felt
these men had got married and had families and children and wives, and houses
and cars. They should not be very ‘luan’ (乱 promiscuous). I therefore obeyed him.
I also thought about my virus. But I performed ‘0’ (being penetrated), and would
not transmit to the client who performed ‘1’ (to penetrate).”
Continual no condom use as a strategy for hiding HIV status
In the following case of Dou, he presented complexities in his decision to use no
condoms with those “lao ke ren” (老客人 regular customers) who had not used condoms
with him before. On one hand no disclosure and no change of behaviour in condom use
was a strategy to hide his seropositive status; on the other hand he expressed some kind
of angry emotion, “to give him his own”.
Dou had five or six “lao ke ren” (老客人 regular customers) who called him five
times or above (for sex services). He said, “Generally lao ke ren did not use
condoms, only these lao ke ren used no condoms…I think, it was a kind of
237
emotional reason to accept no condoms with them…Because I trusted them, I
therefore used no condoms… you know, they look for me for multiple times, it
means they like me, look up to me, support my business, I have more or less
appreciation for them, more or less emotional attachment, and therefore accepted
(no condoms)… We either use condoms insistently, or no condoms at all once I let
them use no condoms for one time… I even didn’t know exactly which sex led to
getting this virus. The most miserable thing is I don’t know which client transmitted
this virus to me.” Therefore he continued using no condoms with these lao ke ren
and using condoms with other general clients as usual after he was diagnosed HIV
positive.
Lack of experience in negotiating condom use and lack of social support
In the following case of Pan, it can be seen that lack of experience in negotiating
condom use, lower social economic power, and lack of support from gatekeepers (e.g.
mamasan) in sex work, push young MB into a more vulnerable situation.
Pan said, “Some clients insisted on using no condoms. When we had sex, I bent
over and he penetrated me from behind. I didn’t know whether they used condoms
or not. Some threw condoms away half way.” Pan felt he can do nothing.
Technically speaking, it’s hard for Pan to make sure his clients are using a condom
when he bends down and his clients penetrate him from behind. Moreover, Pan
said, “one time a client asked me to suck his dick, I insisted on using a condom.
Later this client complained about me to my ‘ma mi’ (妈咪 mamasan/procurer). Ma
mi criticized me that there’s no problem of no condom use in oral sex.”
6.5 Comparing factors associated with UAI among commercial and non-commercial
partners
In sum, some factors are influential no matter whether respondents have sex with
non-commercial or commercial partners, such as emotional and psychological factors,
misconceptions about HIV transmission, partners refusing condom use and non-disclosure,
238
partners’ responsibility to protect themselves, and substance use.
When the respondents have sex with commercial partners, social economic factors
exercised more power over UAI. Some MB had less clients and had to accept clients who
did not use condoms; some were criticized by their mamasan for using a condom with
clients in oral sex; some used no condoms to please their “lao ke ren” (老客人 regular
customers).
When the respondents had sex with lovers or stable partners, factors of fear of
losing partners and non-disclosure exercised more power. When respondents had sex with
casual partners, some factors exercised more influences, such as culture on condom use
in a tongzhi sauna setting, comparative moral judgment, erectile dysfunction as a barrier,
and lack of effective legal regulations and remedies.
Moreover, it emerged from the data that UAI is usually not the single determinant;
instead the occurrence of UAI is embedded in interconnected social ecological factors.
6.6 Reduced risky behaviour after diagnosis
Stopping UAI after being diagnosed HIV positive
Most respondents (34/45) reported stopping UAI immediately after being diagnosed
HIV positive. Among these respondents, some practised less anal sex, and resorted to oral
sex or masturbation.
You said, “During these three months, I have had only one friend (sex
239
partner)…Occasionally when I have time, I will go to see him. I seldom look for
others. I have masturbated myself mostly in these three months…Basically one
time per week at least. That’s normal. If I was with him, we had more than one time
per week. …Even though we used safe measures, I still have a kind of
self-accusation.”
Qian said in the first interview that “in my opinion, I condemned this man (who had
UAI with others after being diagnosed HIV positive). Why still have (UAI) after
diagnosis? At least, you should take some basic safety measures.” In the second
interview he said, “Before I had a boyfriend (who was also HIV positive), I
generally depended on my own hands (masturbation). Hehe (smiles slightly), men
have to rely on their own hands.”
Jiang said, “Actually I like the feeling of hugging together when we lie down in bed
and it is more peaceful…I really want to have a stable boyfriend to address my
emotional needs and sex is not the most important thing…We only have kissing,
oral sex, and masturbation, definitely no ‘1’ and ‘0’ (anal intercourse)… condoms
must be used, even in oral sex.”
Some respondents practised sexual activities as usual but used condoms
consistently.
Yan said, “Actually I do not reduce (sexual activities) deliberately. It’s similar to my
previous (sexual activities) in Guangzhou.”
Kong continued accepting some men who approached him and they had sex with
condoms.
Chen was another case. During my fieldwork, I shared an apartment with Ping and
Chen for six months. Chen brought men home and had sex occasionally. And he
said he insisted on using condoms in anal sex.
Qin looked for partners from online singing rooms and had sex with condoms.
Tao disclosed his condition to his long-term partner and was accepted and cared
for. They still had sex and used condoms.
Abstinence or reduced frequency of sexual activities
Some respondents resorted to abstinence or reduced frequency of sexual activities.
240
They did so for reasons including avoidance of HIV transmission, self-isolation, developing
health problems, losing sexual interest or having a simple life.
Shen was abstinent after becoming HIV positive. He said, “Basically I have been
isolated in these three months. I have only one friend (good friend but not partner)
who I told you about before (in the first interview). He knew about my situation. I
only contacted him and hung out with him occasionally.”
Yang said, “In the first month (after I was diagnosed), I took medications and had
some problems. I therefore went to bed earlier. In the second month, I was getting
better and browsed the Internet sometimes, but I didn’t chat qq. Now I am
gradually opening up and chat with some friends. But I don’t go out to meet
Internet friends. I lie to them that I have a boyfriend. Hehe, I basically cut out these
allures…I don’t have sex now (in this three-month period).”
Qi said, “I don’t look for boyfriends anymore. I have lost interest in having sex. I
just want to have a good life.” Three months later, he still had not had sex.
After becoming HIV positive, Feng lost interest in men, and greatly reduced his
sex, and he did not have sex with others. He said, “Previously I had strong sexual
desire. But after getting infected, I have become weaker physically and my sexual
desire has also decreased. …previously I masturbated quite frequently, but after
getting infected I don’t even want to masturbate.”
Jian said, “Actually my life is very simple, working and then doing physical
exercise, and have only a few friends in this circle. In these three months, I haven’t
had any sex.”
6.7 Factors associated with condom use
6.7.1 Individual factors
Self-protection
To protect themselves was a generally reported reason for using condoms when
respondents had sex with others. The infection of HIV has been a serious threat to their
241
health, and they worried about being infected by other viruses or cross-infection.
Self-protection has been widely practised, so that they can prevent the deterioration of
their health. The awareness of protecting oneself is an important indicator that HIV positive
MSM adjust to the situation of being HIV positive. Those respondents who expressed a
strong desire to protect themselves generally had good life management and awareness
of STDs, anal diseases, cross-infection and complicating diseases and these respondents
reported practising condom use consistently. Many respondents were not very clear about
what cross-infection was. Generally, in their understanding, it was being infected by
another type of HIV or STD or other virus again, which would further deteriorate their
health. For example, getting infected with a strain of HIV that has developed resistance to
ART will make them develop resistance to ART as well. In this regard, the motivation
behind avoiding being infected by any virus again and self-protection was their instinct to
live and to avoid suffering.
Zhang said: “No condom when having sex will cause cross-infection…because I
want to ‘huo xia qu’ (活下去 survive). It’s a simple reason. Because this world is so
wonderful, haha (smiles).” He also expressed his understanding of cross-infection
that “a virus in my body and another virus in his body cross together and cause a
mutual infection. …just like soy sauce, for example a soy sauce from Guangdong
mixes with a soy sauce from Sichuan. When different viruses cross together, it’s
hard to tell what symptoms would appear. It’s very troublesome. ”
Zhou also expressed his survival instinct that “I had never experienced this thing.
No one would like to die, honestly speaking. Men die one day, but don’t want to die
at such a young age.”
Hua said, “After getting HIV infected, I have been especially afraid of being
infected by other viruses since my immunity is very low now….As the doctor said,
the viruses we get infected with are different. If no condom is used, it’s easy to
have cross-infection, since our immunity is very weak. …Therefore we must use
condoms and reduce the risk of getting infected by other viruses.”
Shen said, “Condom use can avoid cross-infection, which has a bigger harm. Our
immunity is low. If we get infected with other diseases, it must be difficult to cure.”
242
Meng said, “Because his virus type is different from mine, when two viruses get
together, it may cause some changes. That’s uncertain…maybe your virus has
developed some kind of drug-resistance…once you get cross-infected it’s not
good.”
During my fieldwork, I heard that the terminology ‘jiao cha gan ran’ (交叉感染
cross-infection) was frequently used. CDC staff, medical doctors, volunteers in
NGOs and some HIV positive peers all used it as a reason to push HIV positive
MSM to use condoms when they had sex with others.
Establishing self-esteem and dignity
To practise condom use with sex partners is a kind of establishment of self-esteem
and expression of self-expectation to be a well-behaved person. It is also a negotiation
with negative social stereotypical thinking of PLWH. Through this negotiation, some
respondents became more confident, self-respectful, self-caring and protecting towards
others. Some respondents achieved self-affirmation after they disciplined themselves not
to hurt others, such as using condoms or exercising abstinence, and then reinforced their
positive view about themselves.
Zhao still had sex with men after he was HIV positive. He mentioned he met a man
and he liked him very much. This man liked him so much as well. But this man
didn’t like using condoms. When they had sex, Zhao insisted strongly on using
condoms and they used condoms at last. Zhao said, “Later I chatted with him on
QQ. I asked ‘why don’t you use condoms?’ and he said he doesn’t like it, they are
not convenient, and it is not his habit. I said you would get AIDS sooner or later. He
said it’s impossible since he is not promiscuous. I said the impossible thing is just
around you; I am also not promiscuous; I am just around you and I am ‘A’ (got
AIDS). At last I said you must use condoms in the future.” Zhao said, “He really
appreciates me and visited me twice later”.
Zhou said, “Not everyone who gets aizibing (AIDS) wants to transmit the virus to
others. No, I believe these people are very few. Before I makes love with others, I
do not disclose to others that I am aizibing. But I remind others to use condoms.
There is a very low probability of getting infected if using condoms. We all know
243
that they still have a sex life even after getting HIV infected.” If partners insisted on
using no condoms, Zhou said “the worst that I can do is give up having sex (with
them)”. He tries to negotiate the negative image of PLWH that “I am a person full
of love; I become stronger, more mature and more self-respectful… cherish life
and realize the importance of life.” Zhou insisted on condom use with sex partners.
Wu disclosed his seropositive status to many of his friends in the circle. He
explained, “I am afraid of being hurt one day. That’s why I told them... I am a
person pursuing ideality. I hope all people I know about have a positive view of
me.” He consistently practised condom use with MB and his BF.
Qi believed in Christ. He said, “I feel my heart is kind, and my heart will not hurt
others…to use my lovely heart to love others, I feel it is really very good, turning
from evil to good.”
The disease experience as a source of personal growth
Some respondents went back to question themselves and were reflective about
their previous life experiences. They came up with some lessons from becoming HIV
positive and learnt from it, such as getting to know more about HIV and condom use, or
building up emotional attachments and boyfriend relationships, giving up unhealthy
lifestyles, caring more about their families and people around them. They found out
something positive in the sufferings caused by HIV/AIDS, and took it as a growing up
process.
Jiang is a typical case. After becoming HIV positive, his boyfriend still accepted
him and they then set up a couple relationship and lived together. Jiang said, “If I
just want to seek sex, I would not look for a stable boyfriend…I really want to have
a stable boyfriend to fulfil my need of emotional attachment, and sex is not the
most important thing.” He tried to reduce anal sex with his boyfriend, since he felt
huge stress and worried about transmitting HIV to his boyfriend. He also totally
changed his lifestyle. He described his previous life as “mi lan” (糜烂的 erosive),
and he wanted to be more positive and active. He also described his previous life
as “fu zao” (浮躁的 volatile and impetuous) and previously he always thought he
had some ”zhi ben” (资本 advantages or superiorities
e.g. Being well-educated,
244
having a good income and being handsome) and he would not think about looking
for a boyfriend, but now he felt he had nothing. He said, “If it were not Liu (his
boyfriend), others would have left me, or I need to lie to them to hide (my
seropositive status) …selfishly speaking, I have no choice. But this choice is just
the one I need.”
Yang described, “My mentality has changed, and my life situation has changed as
well. After work, I like to go back home earlier, or go to do physical exercise, or go
to gym, or stay at home with my parents…My personality has changed. Previously
I felt ‘wu suo wei’ (无所谓 indifferent) to everything…I was free to do everything as
I liked. After I got this disease, the most important change I have undergone is
treating my family better…spending much more time with my parents and chatting
with them. Even my parents said I had changed and liked to stay at home. Maybe
the biggest reason is that I am restricted by this disease and I cannot screw
around. Secondly, after taking these medicines (ART), there has been some
restriction, such as not staying up late or not working too hard. After I had these
two
basic
changes,
many
things
gradually
changed
in
this
direction
automatically…I changed many bad habits, caring more about people around me,
caring more about my family, cherishing everything that I have…and my mentality
was balanced, not so irritable as in the past.”
Hei said, “Honestly speaking, at that time I just knew making love was comfortable,
but I didn’t know what making love was totally and didn’t know at all (that making
love without a condom can transmit HIV). I just knew about it after I got to know
‘qin you hui’ (a grassroots NGO). I then read something about HIV/AIDS. Before I
got to know ‘qin you hui’, I never thought no condom use would allow you get HIV
infected from others. I never thought about it. I feel it was because I was innocent.
This is a process of growing up.”
Fear of getting into “trouble”
Fear of getting into trouble was a reason why some respondents used condoms.
Some respondents worried some men would get revenge on their sex partners who were
regarded as having transmitted HIV to them.
Xu said, “Sometimes I want very much to have sex, but I dare not do so. Once I
transmit the virus to them, I will be really in trouble. I therefore need to control
245
myself. If I cannot control it, I will then overcome it by myself (masturbation). I
would not do (have sex) without condoms. Even though I don’t like to use
condoms, I dare not have sex with them without condoms…I am afraid and don’t
want to hurt others. It’s real.”
Hua said, “Before I realized that I was infected, I had sex with many people, some
of whom are my acquaintances. I worry one day that they will know that I am
infected, and he will then talk to all the other people. I worry they will ‘zhao dao wo
tou shang lai’ (找到我头上来 attribute responsibilities to me and blame me). I
cannot take this responsibility and I will be cut into eight pieces”.
6.7.2 Interpersonal factors
Condom use as a symbol of altruism, love and self-help
It was becoming general practice among many respondents to protect others and
oneself together by using condoms. To protect others is usually regarded as a kind of
altruism. However, respondents presented that altruism is not only about helping others,
but essentially a kind of self-help and self-release. It is a kind of negotiation with the desire
to be a good person, which makes them perceive self-affirmation and build up self-esteem,
significant others’ expectation, such as peers and friends’ expectations and judgments,
which plays an important role of social surveillance, and social norms and values of
protecting others. When they were diagnosed HIV positive, they signed an agreement with
the CDC and they were clearly asked not to transmit HIV to others. Respondents could
comfort themselves and reduce stress through protecting their partners
Shen said, “I feel I don’t want to do that (get revenge on others or society). I feel
that it is meaningless. What benefits will I obtain if I hurt others? None at all. If I go
to help others, I may obtain a kind of comfort. There’s nothing good for me if I do
that (get revenge on others or society)…Even if you transmit the virus to others,
you cannot live two years longer, right! That is not necessary. I may help myself if I
246
help others, since I can have a happy mood, and I can obtain release and comfort
in mind.”
Chen said, “I would not deliberately hurt others. I would not do that. It’s also a kind
of self-protection. No matter how unlucky I am, it’s my own business and it has no
relation to others. I would not easily get revenge on someone, since it will bring
with me stress.”
Shi said, “Since I got infected, I have to admit that it was predetermined by fate. I
should cherish myself. Transmitting HIV to others is a kind of behaviour hurting
others and ourselves.”
Qian said, “Many people (PLWH) said it’s ok to have fun (having sex) and just
need to practise safe measures, protecting others and ourselves, and avoiding
cross-infection.”
Hei said, ‘bao hu bie ren, bao hu zi ji’ (保护别人，保护自己 protect others and
protect myself)
Some respondents used condoms to protect the one they loved/liked, and condom
use is an expression of love and care. In this regard, many respondents realized that to
protect others is actually a kind of self-affirmation.
Zhao said, “I feel he is quite an excellent man and he is working on technologies. I
feel I have no need to hurt him.”
Hei had sex with a young man he loved so much and he used condoms actively
even though he knew if he had not used a condom, this young man would still
have accepted having sex with him.
Wu insisted on using condoms when he had sex with his boyfriends.
Some respondents disclosed their condition to their boyfriends and then insisted on
using condoms.
Jiang had a boyfriend relationship with a young man who was HIV negative. He
then had no external sex partners ever since. Every time when they have sex, no
matter oral sex or anal sex, they use condoms. Jiang said, “He is my family…when
we kiss, I even don’t open my mouth.”
Meng and Sun also insist on using condoms with their sero-concordant boyfriends.
247
6.7.3 Community factors
Volunteerism and its effects on condom promotion
Volunteerism has been widely promoted in Shenzhen, and it is also widely accepted
in MSM communities. Some of my respondents were volunteers (11/45). They developed
some skills to utilize the collective identity of being a volunteer to negotiate condom use
with casual partners. Volunteers also promoted the identity of tongzhi in the MSM
community. And the collective identity of tongzhi is used to encourage condom use by
some respondents. In volunteer circles, condom use has been significantly promoted and
practised. Among volunteers, especially active volunteers, using condoms with everyone
was highly encouraged and accepted.
Zhao utilized volunteer work as a discourse to negotiate condom use and to avoid
disclosure of his seropositive status to casual sex partners. He described, “I spoke
to him (sex partner). Because I have a lot of condoms and booklets in my bag, I
said I am a volunteer. I said I pay much attention to HIV/AIDS. I said I didn’t know
whether you have diseases and you also don’t know whether I have diseases;
therefore it’s better to use condoms.”
Qin said, “If he wants to use no condoms, I make it definitely clear that we must
use condoms…I say it’s for our safety…as tongzhi, we must use condoms when
we do it (have sex).” This is not a single case. During my fieldwork, a volunteer
named Murong chatted with me in a tongzhi bar. It was my first time to meet him
and he therefore treated me as a general client at that moment. He distributed a
package of condoms to me and said, “as a tongzhi, it’s our responsibility to use
condoms”.
Hua discussed HIV issues with his friends and pushed them to use condoms. He
sometimes faced the question ‘why do you know about that (HIV)?’ He then
explained, “I am a volunteer and take part in activities in ‘YGL’ (the association of
volunteers)…The HIV issue has become serious and we need to use condoms.”
During my fieldwork, peer influence in condom use did work among close friends.
248
Jiang and Tong were a well-known couple in volunteer circles since they were a
sero-discordant couple. They practised 100% condom use. Tu, a volunteer and a
close friend of Jiang and Liu, admitted that he had had UAI previously, but now he
practised 100% condom use with his boyfriend as well.
Shuai was also a volunteer, and he used no condoms with his boyfriend. Later he
was criticized to the point of crying by the leader of a volunteer group and other
volunteers also disagreed with his behaviour of no condom use.
When I stayed in the apartment of Ping, a senior volunteer, I witnessed Ping and
his new boyfriend discussing condom use and later Ping successfully pushed his
boyfriend to use condoms.
Some respondents went from adjustment to being newly diagnosed HIV positive to
real action by way of contributing to the MSM community. They presented a clearer identity
of being HIV positive, and they wanted to help others against HIV and really took action in
volunteer work. And they became more self-disciplined in avoiding UAI.
Hei set up a qq group and chatted with newcomers online, providing them
information and psychological support.
Zhu took part in SRW social initiative campaigns against HIV/AIDS and presented
himself as an example of PLWH in a seminar in front of many middle school
students.
Shen said, “I rely on myself…comfort myself, and adjust myself…I therefore think
that for those newly diagnosed HIV people, some of them are very young, or have
just graduated from school, how they can go through their later life? I therefore
want to help them…I have experienced a lot indeed and have a better coping
capability.”
249
6.8 Other special issues related to risky sexual behaviour
Disclosure of HIV status to sex partners
Partner types and disclosure/non-disclosure
Many respondents (21/45) disclosed their condition to their boyfriends,
ex-boyfriends or sex partners who they liked/loved. It seems that they still trusted their
boyfriends, ex-boyfriends and some sex partners, and hoped to obtain social and
psychological support from them. Another three respondents (i.e. Meng, Fan and Lang)
had sero-concordant boyfriends. But no respondents disclosed their condition when they
had sex with casual partners. There were different outcomes after respondents disclosed
their condition to their sex partners. Some were accepted and cared for and therefore
developed closer relationships, while some were alienated or abandoned.
Sun, Lv, Tao and Jiang strengthened their relationship after disclosure.
Wu was kicked out and gossipped about by his boyfriend after disclosure to him.
Zhu broke up with his boyfriend later.
Zhao left his regular sex partner later.
You felt not being cared for by his ex-boyfriend and was deeply hurt.
Obstacles to disclosure
Perceived social stigma is a crucial factor that prohibits respondents from disclosing
their seropositive status. Actually, most of the respondents did not experience direct stigma
or discrimination because of their seropositive status, since most of them did not disclose
publicly. They generally perceived strong social stigma and discrimination against PLWH.
250
Yan said, “If it’s AIDS, it must be regarded as indecent, lascivious, dead. Me too, at
the beginning (before I was diagnosed) I thought this way. That’s they must be
promiscuous, as they got AIDS. Anyway it’s a disgraceful affair…people would
spread out this news, gossipping about him, keeping a distance from him…for
general people, if you tell them, they must be shocked…afraid of you, and even
dare not have a meal together with you.”
Some respondents, such as Han and Yan, acknowledged that before becoming HIV
positive, they themselves actually also stigmatized and discriminated against PLWH.
Han said, “I now have an identity of an infector, and I know about the HIV positive
group. They organized some activities, but I didn’t want to join them. …Before I got
infected, I didn’t like infectors, a feeling of being very disgusting or I felt they were
dirty or ugly. …But if I have fun with general people, I may forget my identity as an
infector, and release my stress…I feel it’s a kind of psychological suggestion.”
Effects of non-disclosure
The prohibition of disclosure leads to embarrassment and creates obstacles in
setting up relationships and negotiating condom use. Some respondents worried that a
change of behaviour, such as shifting from non-condom use to condom use and changing
from casual partnerships to regular partnerships, might lead to their disclosure. As
presented previously, Dou, Zhu and Jin had this experience, and three of them practised
UAI with their clients or partners in the context of non-serostatus disclosure, since they
worried that changing from non-condom use to condom use (Dou and Zhu), or changing
from casual partnerships to regular partnerships (Jin) may disclose their seropositive
status.
This implies that non-disclosure is an obstacle to changing one’s behaviour and it is
251
inconsistent to say that there are behavioural changes (e.g. condom use and stable
partnerships) without serostatus disclosure. Some respondents claimed that they changed
from non-condom use to condom use after being diagnosed HIV positive; however, in
practice they reported no condom use on some occasions. Jin, Zhu and Yan were cases in
point, and when they all did not disclose their seropositive status to their sex partners, they
found it very difficult to negotiate condom use with their partners and therefore there was
no condom use in anal sex.
Disclosure, social network, associated with the size and composition of sexual
networks
For those respondents who had close relationships with HIV positive groups,
grassroots organizations or NGOs, they had closer connections with peers and friends.
They became more able to make serostatus disclosure. Zhang, Miao, Zhao and Feng
disclosed their status in HIV positive MSM circles; Wu largely disclosed his condition in a
general MSM circle; Jiang disclosed his condition in a grassroots organization; Chen
disclosed his condition among his friends, peers and some colleagues. Sun, Qian and
Wang disclosed their condition among several close friends. These respondents shared
one characteristic in that they all practised condom use when having sex with others after
the diagnosis. And their sexual network is closer to HIV positive groups, compared with
other respondents who do not disclose their condition to MSM circles, such as You, Yan,
Qin, Zhou, Xie, etc.
Other respondents disclosed their condition to one or two very close friends or
family members. But they were largely outside the supervision of and connection with
peers or friends in MSM circles, such as Yan, Hua, You, Hei, Qin, Xie, and Zhou. Some
252
respondents even only talked to me and the leader of the SRW, such as Han, Qi, Wei, Jian,
Shi, and Kong. These respondents had a more diverse and casual sex network, and
several of them even used no condoms with serostatus-unknown partners, such as Yan,
Hei, Xie, and Han.
For those respondents who tried to avoid contacting HIV positive groups, grassroots
organizations or NGOs, they were less able to disclose their seropositive status to friends
or peers. Ren was a case who tried to avoid contacting HIV groups, and I saw him several
times in a sauna qq group trying to approach partners. Their sexual network did not have
obvious differences from their previous network or they just changed their pseudonym or
qq names and joined other MSM qq groups. In this regard, disclosure to MSM circles (HIV
positive MSM circle included) or not is related to the changes in the size and composition
of their sexual network.
Sero sorting
Most respondents said that they hoped to look for a partner among HIV positive
peers. HIV positive MSM set up their own qq groups which provided spaces for them to
look for friends or partners. A large group covers more than several hundred members (e.g.
HPG), while a small group just covers a dozen members (e.g. XHM). Sero sorting was
therefore possible. Some respondents had sero-concordant partners after they were
diagnosed HIV positive, such as Meng, Jin, Qian, Wang, Feng, Fan, Lang, Sun and Li, and
they reported being in an existing relationship, and that it was not a kind of purposive sero
sorting (e.g. for having sex).
But in practice, it was quite hard to look for sero-concordant partners. It is a general
253
experience that it is hard to look for a boyfriend in MSM circles, and it is much more difficult
to look for a sero-concordant boyfriend. One of the reasons is that the circle of HIV positive
MSM is much smaller. In Shenzhen, for example, MSM circles can reach 100,000, but the
HIV positive MSM circle is just several hundred. Another reason is because serostatus
disclosure is the first step in sero sorting, but serostatus disclosure is another hard issue
they need to face. Third, considerations of “realistic” issues, such as caring more about
money and health status of their possible partners, increased the difficulties of looking for a
sero-concordant partner and setting up a relationship. The following are such cases.
Hei said, “I am very stressed psychologically now. Sometimes I really want to look
for a partner to live together with conscientiously. But when I really go to look for
someone, it’s really very difficult. Among tongzhi circles, it’s very ‘xian shi’ (现实的
realistic) already, not to say you are HIV positive. To look for a partner to live
together with has become more difficult, because it’s too realistic indeed!”
During my fieldwork, when Zhou asked me to introduce a sero-concordant
boyfriend to him, he paid more attention to income level, the time of getting
infected and health status of the potential man.
For most respondents, after becoming HIV positive, it more difficult for them to
look for a lover or stable partner, even though many respondents hoped to look for a lover
or stable partner and what they need focused more on mutual care than sexual needs.
Some respondents mentioned that they yearned for the feeling of home, such as Qian,
Shen, Feng, Zhou, Ren and Jiang. Some respondents were very disappointed that they
could not look for a boyfriend, such as Shen, Xie and Zhou. Some search for casual
partners mainly, such as You and Chen. Some even try to avoid setting up stable
relationships with sero-discordant partners, such as Zheng and You. Some were struggling
over whether to date a sero-discordant partner and make disclosure or not, such as Kong.
254
A few respondents insisted on looking for sero-concordant partners. Only Qian and
Meng said that they insisted on looking for sero-concordant partners, and later they did
have sero-concordant boyfriends. Both of them reported having no other partners anymore
after they met sero-concordant boyfriends. However, meeting a sero-discordant partner
was quite frequent among all respondents. Many respondents had experiences of meeting
a sero-discordant partner, such as Zhu, Jiang, Zhao, Xie, Qin, You, Hei, Han, Peng, etc.
Some respondents had no idea of sero sorting at all, such as Peng, Kong, Jian, Yan and
Shi. Few respondents had a stable boyfriend who accepted him and did not think about
sero sorting, such as Tao and Jiang.
Sex and condom use with female partners
Nine respondents reported having sex with females (e.g. their wives or girlfriends),
such as Shi, Tao, Hua, Qi, Bai, Yan, Dou, Yun and Su. All of them reported consistent
condom use with their female partners after being diagnosed HIV positive. Shi, Bai, Yan
and Dou, did not use condoms with female partners consistently before his HIV diagnosis,
while Tao and Su used condoms with their wives or girlfriends consistently before their HIV
diagnosis. And based on these men’s experiences contraception was a usual reason for
condom use.
Only one of them (Bai) disclosed his condition to his wife actively and he was
accepted by his wife. Two respondents’ conditions were disclosed passively by others (e.g.
physician or boyfriend) to their wives: one was accepted and the other was struggling in
his family. Another three men did not disclose their condition to their wives and one man
just told his wife he had diseases. None of them disclosed their condition to their
girlfriends.
255
Only Bai disclosed his condition to his wife actively after he was diagnosed HIV
positive. Shi and Hua’s conditions were also disclosed to their wives passively.
When a doctor informed Shi that the result was positive, his wife was with him at
the hospital and therefore he disclosed his condition to his wife. Hua did not talk to
his wife about his HIV positive status, but his boyfriend called his wife and
disclosed it to her.
Qi just told his wife that he had a kind of disease, but he did not say it was HIV.
Tao didn’t talk to his wife about anything, and he asked his wife to take a rapid test
to check for “hepatitis B” but actually this rapid test was for HIV.
Yan, Dou, Yun and Su had not got married yet but they all had girlfriends and none
of them disclosed their condition to their girlfriends.
Lang is a special case. In my interview, he did not mention his wife or whether he
had disclosed his condition to his wife. But other HIV positive peers told me that he
had a wife and children, but he had not asked his wife to have an HIV test.
Moreover, all of these men reported that their frequencies of having sex with their
wives or girlfriends were generally low even before their diagnosis.
Shi had a general frequency of having sex with his wife, since his wife lived with
him in Shenzhen. Bai was similar to Shi.
Tao’s wife lived in her hometown, and Tao went back home once every month.
Their frequency of having sex was quite low.
Hua’s wife lived in another province far away from Shenzhen. They seldom had
sex. Qi was similar to Hua.
Yan, Yun, and Su had girlfriends, but they were in different cities, and their
frequencies of having sex were not high.
Few respondents even thought about getting married to a sero-concordant woman
under a mutual agreement for a no sex marriage. The purpose of this marriage was just to
get back into mainstream social life, and have a family and mutual care. Zhang told me he
would get married to a sero-concordant woman in my interview. During my fieldwork, when
I visited his home, I saw his woman living together with him, cooking and washing.
256
Risk perception
Selective risk perceptions according to partner type
Most respondents perceived that using condoms and lubricant can greatly reduce
transmission of HIV, and they also realized that risk still exists even though it is very low,
such as in the case of condom breakage. However, this awareness of risk changed when
they met different types of sex partners. If they met casual partners, many of them would
not think too much about the risk of transmitting HIV to others. But when they met partners
who they liked very much, their feeling of guilt or nervousness would increase, and they
would worry about HIV transmission to their partners, and even disclose their condition to
them.
You described, “If a man is a very outstanding one who I really love in terms of
outlook, facial features, body and personality, to have sex with him gives me a
deeper sense of guilt. I would feel that he is such a wonderful man and he is with
me who is an ‘A’ (HIV positive). I then would feel a sense of guilt and feel apology
to him. …if we do it (have sex) just in an instance of passion, the sense of guilt is
much less, and you wouldn’t think too much about it. Maybe at the moment of
meeting, I felt he was fine, but I didn’t feel he was really good later. That he was
not the one who was really my match. After having sex with him, I felt that I just
saw it as venting my sexual desire, and my sense of guilt was not heavy.”
Shen said, “I now always put myself in the position of patient. I am always this way.
I am afraid once I meet the one I like, or he likes me, once I transmit HIV to him, or
he finds out I am (HIV positive), what should I do?” He further explained, “If you
like him, or love him, you would not want him to have the same thing (HIV) as you.
Second, once you like him and he likes you as well. He knows about you (HIV
positive), he will immediately discriminate against you and leave you, do you think
that is suffering!”
Tao worried about transmitting HIV to his long-term boyfriend and his wife. He said,
“The biggest worry for me is my friend (boyfriend and sex partner). I worry about
transmitting (HIV) to him. And then he may transmit (HIV) to his wife, since he
257
doesn’t use condoms with his wife. I worry most about this.”
Zhao said, “I liked him and he liked me as well. …I felt he was quite outstanding,
working on technology. I felt it was not necessary to hurt him. Therefore, each time
when he called me to visit him (to have sex), I declined. Only for this one, I
accumulated a great deal of courage to disclose my condition to him because I felt
he would get A (AIDS) sooner or later if I didn’t tell him.”
Risk perception related to oral sex
No condom use in oral sex was popular among the respondents when they had sex
with casual partners. Some of them perceived oral sex as not being able to transmit HIV or
just having a very low probability of HIV transmission.
Xie said, “In September someone had oral sex with me without a condom. Several
times (in saunas), at midnight or in the afternoon, someone sucked my private part
(penis) and used no condom. I feel that since I got into this circle, I have only seen
one man use a condom in oral sex.”
Fan said, “No matter others ‘cui’ (have oral sex for) me, or I ‘cui’ others. I don’t like
using condoms. I hate the smell of plastic.”
You said, “it (others having oral sex for me) would not transmit HIV. Some of them
even swallowed (my semen). The opportunity for transmission is very low, and
many tongzhi said it’s just 0.1%.”
Pan, a MB, was criticized by Mamasan, since he asked clients to use condoms in
oral sex. And this mamasan said there was no problem in having oral sex without
a condom.
A potential bridge for HIV transmission between rural and urban areas
Some respondents moved back and forth between their hometown and Shenzhen,
and potentially bridged MSM communities on both sides. For example, Zheng and Qin had
sexual activities in both Shenzhen and their hometown, even though they reported
condom use in these activities. Some respondents moved back to their hometown after
258
being diagnosed HIV positive, even though they did not report having sex with others in
their hometown, such as Qi and Kong.
HIV positive MBs play a very significant role in this potential bridge, since they
present a very clear characteristic of moving from one city to another within a short period
of time, such as every one or two months. Based on my respondents, they moved to cities
within Guangdong provinces, and then to big cities outside Guangdong, such as Beijing,
Shanghai, Hangzhou, Chongqing, etc. After my interviews, I still kept in touch with my
respondents through QQ, and I found out later that Su had moved to Suzhou; Lv moved to
Shenyang for some days and then went back to Shenzhen, and he quickly formed a group
of MB with three other young boys and moved to Chongqing again. Lv made it clear that in
another city, there were four clients who did not want to use condoms when they had sex,
and later he accepted no condoms with two clients.
Response to HIV prevention and policies
Some respondents expressed their opinions about contemporary HIV prevention. It
had been announced that they need legal protection for same sex marriage, which can
provide them a more stable status with their partners. In other words, it is necessary to
tackle the social structure as an important strategy. Some activities of HIV prevention and
intervention have been recognized, such as peer communication, public welfare
advertisements, propagations, IEC materials, and condom and lubricant distribution.
Moreover, they also realized the difficulties of condom use, such as the desire of lust and
instantly having sex. A need for free high-quality condoms was also expressed.
Shi said, “Because the law in China is not sufficient to cover this (same sex
259
marriage), there is no restriction by law and they would never constrain
themselves (to have single partners and safe sex). …That’s why the prevalence is
so serious. No one manages it. …I think, just like other countries, same sex
marriage should be legalized, and people at least can have a marriage certificate,
and their relationship has legal status. …. Otherwise it’s out of control. For our
work nowadays, such as distributing condoms, it’s just useful for some men. If they
have this ideology, they will protect themselves. Even though you don’t provide
them free condoms, they will insist on using condoms. If they don’t, they just feel
they want to save money by having free condoms. We just do some promotion,
and it ultimately depends on them.”
Xie said, “Because we are this kind of people and don’t have BF (boyfriends),
today you are with this man, but tomorrow you will be with another man. Now there
is much promotion, and IEC materials are everywhere. There are public welfare
shows in T Sauna as well. Every week they have performances and it’s for
advertising (safer sex). Moreover, (in some saunas) there are condoms and
lubricants in every room. Previously we needed to take them from the counter.
More and more attention has been placed on this issue. But in T Sauna, nothing is
put in its rooms where men usually have sex. When some men are in a hot
moment and nothing is prepared, they just do it and take a shower after sex. I think
these clubs should put lubricant, condoms and handkerchiefs in their rooms. It will
be more humanized.”
Jin said, “I think the most important thing is internal communications between
tongzhi. I believe it will have a bigger effect and more public credibility (among
MSM circles). For gays especially, peers are more persuasive. They should
regularly go to bars and parks to distribute condoms, and collect them to provide
training. It will be better. But sometimes when both guys get very hot in a moment,
they already throw away the idea of using condoms. Many men realize the
importance of condom use, but they still get infected. Me too, before I got infected,
I read a lot of materials, but I still got infected.”
Han said, “The direct contact between flesh and flesh is absolutely different from
that with plastic. I don’t know what kind of condoms they use. But the condoms
inside (saunas) are not so good, and the feeling may be worse. I hear about many
advanced condoms now, such as zero contact feeling. But the men in saunas
would not use such a good condom. And therefore the feeling is not so normal.”
260
6.9 Summary of sexual risk in a modified socio-ecological model
The majority of respondents reported giving up UAI totally after being diagnosed
HIV positive. Among these respondents, some practised less anal sex, and resorted to oral
sex or masturbation; some practised sexual activities as usual but used condoms
consistently; some respondents resorted to abstinence or reduced frequency in sexual
activities.
Some of the UAI happened within the first few months after they were diagnosed
HIV positive: Zhu (3rd month), Hei (1st month), Jin (3rd month) and Ge (1st month). During
this period of time, the men generally suffered considerably from uncertainty, perceived
stigma and discrimination, and a struggle with their identity. But later most of them calmed
down and engaged in a more active life, such as Zhu, Hei, and Jin. Some men practised
condom use in anal sex with sex partners, while some men continued practising UAI, such
as Lv and Han. Some of them initiated condom use but later relapsed to non-condom use
on some occasions, such as Xie and Yan. These men did not present a more positive view
about their life and did not have significant changes in their lifestyle. Some of them
practised UAI or not and it depended more on their sex partner/clients, such as Fan, Dou,
Pan, and Ge, and all of them were MB. Among these UAI, most of it happened with casual
partners and commercial partners, and little happened among lovers and stable partners.
For oral sex, non-condom use was widely practised and there was no significant difference
in comparison to the time before they were diagnosed HIV positive.
These respondents’ behaviour was dynamic. Some respondents claimed that they
loved their boyfriends, but practised unprotected sex with them (e.g. Zhu who was actually
a peer education volunteer), or even potentially transmitted HIV to his boyfriend (e.g. Lv).
261
Some practised protected sex with one partner, while having unprotected sex with another
(e.g. Jin), or potentially transmitted HIV to a sex partner, while on the other hand set up a
qq group to help HIV positive peers (e.g. Hei). Some totally realized the need to use
condoms, but still frequently used no condom with their partners and associated this
behaviour with diverse factors (e.g. Xie), or did not make any changes in condom use, “to
use no condoms with lao ke ren (regular clients) and to use condoms with general clients
as usual” (e.g. Dou). On one hand Dou presented an emotion of “to give him his own”, and
on the other hand it was also a kind of strategy to avoid serostatus disclosure.
Through the aforementioned data presentation, negative and positive factors
associated with condom use in a modified social ecological model have been identified. In
the aspect of social ecology, some factors play a negative role, such as forming a norm
(reminding partners to use condoms first, but if they insist on using no condom, they then
do not have responsibility or guilt over using no condoms), a big structural barrier (fear of
losing partners is an important interpretation of UAI because it is difficult to look for a lover
or stable partner), casual partners and anonymous sexual encounters in a tongzhi sauna
setting, commercial sex partners and MB’s lower social and economic status in negotiating
condom use, selective condom use as a strategy for hiding HIV status, lack of experience
and social support, and lack of effective legal regulations and actions against deliberate
HIV transmission. However, some factors play a positive role in condom use. Condom use
is constructed as a symbol of altruism, love and self-help, and volunteerism plays an
important role in condom promotion and providing social support.
In the aspect of cognition and emotion, some factors have negative effects on
condom use, such as psychological and mental health status (e.g. anger and revenge),
misconception of “zhuan yin” (changing to be negative), a value of nothing to lose after
262
becoming HIV infected, perceived low risk of HIV transmission from the one who performs
being penetrated compared to the one who performs penetration, moral judgment of
punishment that is also related to a feeling of unfairness or fairness and owed to them or
owing. Moral judgments provided justifications for UAI when sex partners indulge in group
sex, swallowing semen and asking for no condom use. However, some factors play a
positive role, such as establishing self-esteem and dignity, using disease experiences as a
source of personal growth, and fear of getting into trouble after transmitting HIV to others.
In the aspect of action, some factors play negative roles, such as the habit of cruising
tongzhi saunas which provide a stress-free environment for unsafe sex, a general practice
of non-serostatus disclosure and lack of skills in negotiating condom use. Occasionally,
substance use (e.g. recreational drug and alcohol use) and erectile dysfunction are also
reported to be associated with UAI. However, a very important positive factor in condom
use is the practice of self-protection, such as avoiding becoming infected with STDs or
other diseases.
6.10 Discussion
6.10.1 Prevalence of UAI
Many studies have reported a very high prevalence of UAI among HIV positive
MSM, ranging from 30% in the US, 18% in London, 34.2% in Holland, 34% in Canada and
44.6% in Lima (Crepaz et al., 2009; Clar et al., 2008; van Kesteren, Hospers & Kok, 2007).
Another study in the US showed that among 674 HIV positive MSM who had a single
steady male sex partner with negative or unknown serostatus and were aware of their HIV
infection, 21% engaged in UAI (Denning & Campsmith, 2005). A study in Lima shows that
no significant differences in sexual risk behaviour were noted according to participants’
263
knowledge of their HIV infection and 27.4% (34/124) of respondents were newly
diagnosed HIV positive in this study (Clark et al., 2008). Unprotected sex has been shown
to be more prevalent among HIV-positive men who do not disclose their condition. A study
showed that use of HAART among MSM living with AIDS increased from 4% in 1995 to
54% in 1999; the percentage of MSM who reported both UAI and multiple sexual partners
increased from 24% in 1994 to 45% in 1999; the annual HIV incidence rate increased from
2.1% in 1996 to 4.2% in 1999 among MSM who sought anonymous HIV testing (Katz et al.,
2002).
In the current study, after the respondents were diagnosed HIV positive, the majority
of them (34/45) stopped practising UAI. However, significant numbers of respondents
(11/45) still reported UAI with their sex partners who were seronegative or unknown
occasionally in my study period. Since the respondents in the current study were newly
diagnosed, they needed to go through an adaptation process over a period of time (e.g. six
months). And the sexual experiences of many respondents during this period of time
changed from a reduction of sexual activities at the very beginning to back to normal later.
It is possible that the prevalence of UAI would increase later if no intervention is carried out
to address the issue of secondary HIV transmission immediately and appropriately in this
very critical adaptation period of time among this high-risk sub-group. Moreover, as
HIV/AIDS progresses, especially when no appropriate treatment is provided timely, HIV
infectivity will increase gradually since the CD4 count will decrease and virus load will
increase over time. In this regard, the prevalence of UAI in newly diagnosed HIV positive
Chinese MSM should also be significant.
264
6.10.2 Partner types and UAI
Influential factors associated with UAI are different based on different partner type.
In a qualitative study in the Netherlands, partner types were articulated as influencing
practices of UAI (e.g. less responsible to casual partners) (van Kesteren, Hospers, Kok &
van Empelen, 2005). UAI with regular partners appears to have more association with
biomedical factors (e.g. recent blood plasma HIV-RNA load and current sexually
transmissible infection); for example, HIV positive MSM used more concrete evidence of
reduced infectivity to justify UAI with their regular partners than they did with their casual
partners; and cognitive factors (e.g. treatment optimism, sexual beliefs or a combination of
both) were predominately associated with UAI with casual male partners (Begley, Chan,
Jeganathan, Batterham & Smith, 2008). A cohort study in Sydney suggested that a
difference in the factors used by HIV positive MSM in sexual decision-making depended
on the nature of the relationship (Begley, Chan, Jeganathan, Batterham & Smith, 2009).
Another study among HIV positive MSM showed that anonymous partners correlated with
lowest outcome expectancies for condom use; and outcome expectancies for negotiation
of safer sex were inversely related to UAI for men with steady partners (Semple, Patterson
& Grant, 2000).
These studies highlight the importance of partner types correlating with different
factors in influencing the practices of UAI. In the current study, different partner types
correlated with different factors in the association with UAI, but the exact correlated factors
were different from the above mentioned international studies.
265
6.10.2.1 Fear of losing partners in a context of non-serostatus disclosure
For lovers or stable partners, a cognitive factor of fear of losing partners in a context
of non-serostatus disclosure is an important explanation for practising UAI. This is
embedded in a social and cultural context that it is generally difficult to look for lovers or
stable partners in MSM circles and it is more difficult for HIV positive MSM. A study in the
US showed that 62% of young HIV positive MSM displayed polygamous sexual patterns in
the past 3 months (Lightfoot, Song, Rotheram-Borus & Newman, 2005). A study in
Shenzhen also showed that 52.6% of MSM were not in a steady or spousal relationship
with their sexual partners (Behringer, 2008). In the specific period of time, newly diagnosed
HIV positive MSM need very much somebody to be around in order to obtain some
psychological and social support, so that they fear losing their partners after newly being
diagnosed HIV positive.
Moreover, non-serostatus disclosure to sex partners is general, especially when
they are at the beginning of relationship establishment and fear rejection. Among HIV
positive MSM who reported unprotected sex, 42% to 48% reported not disclosing their HIV
status to prospective sex partners before having unprotected sex (Ciccarone et al., 2003;
Marks & Crepaz, 2001). In an ethnographic study in the US, few HIV positive MSM had a
consistent pattern of disclosing their condition since disclosing one’s HIV status to sexual
partners is complicated and dependent on multiple and often competing emotional,
situational, and legal factors (Gorbachh et al., 2004). Therefore when these newly
diagnosed HIV positive MSM meet someone they love or like, they might not care about
UAI.
266
6.10.2.2 Anonymous sexual encounters and moral judgment
For casual partners, the culture of condom use in a tongzhi sauna setting and moral
judgment play significant roles in relation to UAI. Tongzhi saunas provide a sexual space
away from external and internal surveillances, while moral judgment provides the rationale
and justification for UAI with sex partners who are regarded as deserving of infection.
A context of anonymous sexual encounter is influential in unsafe sex. Although
some men might have a clear notion of personal responsibility for safer sex, contextual
factors can influence whether behaviour is consistent with their norms of personal
responsibility; for example, anonymity of sexual encounters, which are lust and sex
oriented with less commitment and emotional involvement, reduce perceptions of personal
responsibility for safer sex (van Kesteren, Hospers, Kok & Empelen, 2005). A study
compared risky behaviour among HIV positive MSM recruited from different sources and
found that men recruited from sex environments (e.g. bathhouses and public cruising
areas) exhibited the riskiest behaviour, such as more male partners, more likely to have
casual sex, more likely to have had unprotected penetrative sex, less likely to have made
serostatus disclosure, and less feeling of personal responsibility than men recruited from
AIDS service organizations and mainstream gay venues (e.g. gay bars and pride events)
(Fisher, Purcell, Hoff, Parsons & Leary, 2006).
Anonymous sexual encounters usually intertwine with an internal psychological
context of substitution needs. A study argued that men with greater substitution needs for
negative emotional states actually had an increased likelihood of engaging in UAI (Craft,
Smith, Serovich & Bautista, 2005). Unprotected sex satisfies some emotional need (I was
so needy that I was not going to stop things…) (Skinta, Paul, Murphy & Dilley, 2009). In
267
other words, when men take part in anonymous sexual encounters, such as having sex in
tongzhi saunas, their purpose for lust is a superficial reason. But what are their in-depth
needs? It may be a kind of substitution need for negative emotional states. Han was a
typical example, who did not experience sexual pleasure when he had sex in tongzhi
saunas, but he continued having sex regularly in saunas. For Han, having sex with men in
saunas was not really about sex, but more about a substitution need of not being alone.
And it may also be a kind of pleasure combined with meeting friends, relaxing and lust. Xie
was another example, who regularly visited tongzhi saunas to meet friends and peers and
enjoyed having sex there occasionally. This is applicable in Chinese tongzhi saunas,
where UAI happened more frequently and was even regarded as the norm in this special
sexual space by some respondents.
Specific characteristics of such sexual spaces need more attention. Tongzhi saunas
are generally dark, quiet, with direct naked-body contact, and no relationships or
responsibilities. Since HIV/AIDS cannot be seen by the eyes, and some men still use no
condoms in saunas and they look happy and healthy, it is easy to create a false impression
that “HIV is not easy to get and it is far away from me”. Tongzhi saunas were therefore
imagined as comfortable, fun and safe places for having sex by some respondents. For
those respondents who reported regularly visiting saunas, sex is a surface reason, and
more in-depth reasons behind are lack of partner, looking for belonging, loneliness,
emptiness, boredom, or other social and psychological problems.
For casual partners, moral judgment is another important factor associated with UAI.
Notions of morality are critical and central to the functioning of people in all cultures, and
the collectivistic and utilitarian themes in Chinese morality have been confirmed (Walker &
Moran, 1991). Attitudes of pragmatism and the prevailing value of pan-ethic are
268
traditionally dominant in Chinese society and equity and harmony are the essential spirits
in traditional Chinese culture (Gu, 2004). Equity and equality are often an underlying basis
for many types of unfairness (Finkel, Harre & Lopez, 2001). Studies have shown that
American society is more rights oriented whereas Chinese society is more duty oriented
and less rights oriented in their moral beliefs (Chiu & Hong, 1997, Shweder & Miller, 1985,
as cited in Chiu, Dweck, Tong & Fu, 1997). In a society like China, there tends to be
relatively more entity theorists, and entity theorists are more likely to punish the target and
to offer duty-based justifications than incremental theorists (Chiu, Dweck, Tong & Fu,
1997). And people are motivated to maintain a sense of equity or fairness in their
relationships with others (Walster, Berscheid & Walster, 1976). Self-attribution is not
associated with sexually risky behaviour; instead HIV positive men who believe that other
persons have intentionally tried to infect them are at especially high risk of engaging in UAI.
This is because they attempt to restore a sense of equity with the world (Bingman, Marks &
Crepaz, 2001). Equity is morality, and attributions of blame, responsibility and intentionality
may evoke negative effects (e.g. anger) to a greater degree.
In the current study, some respondents presented a clear moral judgment against
specific sexual behaviour. HIV is regarded and utilized as a kind of punishment of those
men who are regarded as doing something bad. Moral issues of equity and fairness are
utilized to provide a rationale for UAI with some sex partners who are regarded as
deserving of infection. For example, some respondents compared their behaviour with that
of their partners and came up with the rationale that ‘I practised some bad behaviour and
therefore I got HIV infected; when you (partners) conduct such behaviour, you deserved to
get it as well’. That’s why sex partners’ carelessness in protecting themselves stimulate
some HIV positive MSM to practise unsafe sex. In duty-based morality, duty, such as the
duty to take care of oneself, is the fundamental justification for the moral rightness of
269
human action (e.g. UAI).
Other contextual factors in casual sex also need consideration, even though they
were not presented as major interpretations in the current study. Firstly, lack of effective
law enforcement and legal regulations and actions against UAI are also used to explain the
occurrences of UAI. If more people were aware that they could be prosecuted for infecting
others with HIV, this might enhance a sense of responsibility and increase the likelihood
that HIV positive MSM disclose their condition to partners before sex (Gorbach et al.,
2004). Secondly, substance use was also reported by some respondents. A study in the
US demonstrated that methamphetamine is associated with UAI among recently
HIV-infected MSM and methamphetamine is an independent predictor of HIV transmission
(Drumright et al., 2006). Alcohol use has also been testified as associated with increased
UAI among HIV-infected MSM (Parsons et al., 2005; Poppen, Reisen, Zea, Bianchi &
Echeverry, 2004; Purcell, Parsons, Halkitis, Mizuno & Woods, 2001).
6.10.2.3 Economic barriers
For commercial partners, economic factors, such as poor economic status, exercise
more power over UAI. High prevalence of UAI among MB has been reported in studies,
such as 29.1% in Shenzhen (Lau, Cai, Tsui, Chen & Cheng, 2009), 35.6% in Shanghai
(Wong et al., 2008) and 47.0% in Guangzhou (Cheng et al., 2010). A study among migrant
male sex workers in Shenzhen showed that 58.3% of respondents depended exclusively
on sex work, and 81.7% of respondents found financial support unavailable in the case of
great economic difficulties or serious illness (Lau, Cai, Tsui, Chen & Cheng, 2009). Another
study in Beijing presented that UAI with casual male partners was associated with
receiving money for sex with men (Li et al., 2008). The current study supports these
270
findings, and presents an unbalanced social economic power relationship between MB
and their clients. It also points out the complicated interaction and negotiation between MB
and their clients, since when some young MB insist strongly on condom use some clients
may think that these young MB are clean and stimulate their desire of no condom use. This
issue is absent in the abovementioned studies.
6.10.2.4 Intrapersonal contexts
Moreover, UAI usually happens in an intrapersonal context of negative emotion or
mental health problems, and/or misconceptions and risk interpretations.
Emotional and/or psychological and mental health state provide an intrapersonal
context for the occurrences of UAI. A relation between UAI and stress or other
psycho-social
health
problems
has
been
observed
in
studies
(Hatzenburhler,
Nolen-Hoeksema & Erickson, 2008; Reisner, Mimiage, Safren & Mayer, 2009; Martin &
Alessi, 2010; Wong, Kipke, Weiss & McDavitt, 2010; Stall et al., 2003). A study among HIV
positive MSM in Canada proposed a moderate inverse-U relationship on negative
emotional states and UAI with a non-regular partner (Calzavara et al., 2011). This finding is
in line with another study that the highest risk occurs for people with intermediate levels of
negative emotional state, relative to low or high levels (Crepaz & Marks, 2001, for a
review). An ethnographic study in Guangzhou also presented that being in a bad mood or
experiencing negative emotions served to promote unsafe sex in saunas on occasions (Li,
Lau, Holroyd & Yi, 2010). In the current study, as presented in the chapter on psychological
and mental health, a wide range of emotions had been experienced by respondents. Some
respondents also attributed their practices of UAI to their emotions of revenge, black mood,
grey, dispirited, and weariness. Even though some respondents did not directly attribute
271
their practices of UAI to their negative emotions, they described the occurrences of UAI in
an intrapersonal context of negative emotions. In this regard, negative emotions among
newly diagnosed HIV positive MSM play roles not only as stressors but also mediators in
the practices of UAI.
Relationships between sexual risk and multiple comorbid mental health issues are
complex and interfering. HIV positive MSM who endorse a greater number of
psychological problems have a greater increase in the likelihood of sexual transmission
risky behaviour (O’Cleirigh al., 2010 as cited in Safren, Blashill & O’Cleirigh, 2011).
Moderate levels of depression may confer additional risk for sexual risk taking (Kalichman
& Weinhardt, 2001). Symptoms of depression (e.g. persistent sadness, loss of interest,
worthless feelings, loss of energy, and concentration problems) can arguably interfere with
the process of making social cognitive judgments (e.g. depression could result in having
worse self-efficacy perceptions), and could therefore interfere with the ability of important
social cognitive variables to predict health behaviour such as HIV transmission risky
behaviour (Safren et al., 2010). Individuals with depression are negatively biased in terms
of their thoughts and beliefs, and they have a negative view of self, the world, and the
future, which could result in more negative views about perceived social models regarding
condom use and the degree of difficulty involved in barriers to condom use (A. Beck, 1972,
J. Beck, 1995, as cited in Safren et al., 2010). It has been presented in the current study
that respondents under stress have a greater tendency to engage in unhealthy behaviour,
such as drug and alcohol use, and casual and risky sex; and such unhealthy behaviour
can further increase the severity of symptoms related to their stress, such as depression,
emptiness and loneliness, just like a “vicious cycle”. In this regard, the epidemic of HIV and
other STI need to be understood within the context of the psychological well-being of MSM
in order to ensure a multidimensional approach to HIV prevention and care.
272
Secondly, risk perception and interpretation are also components of an
intrapersonal context when UAI happens. In the US, rates of unsafe sex, sexually
transmitted diseases and HIV infection have been rebounded among MSM since the
introduction of HAART in 1995 (Rosser et al., 2010). The perception of negative health
consequences (e.g. HIV transmission) when on HAART was significantly lower for the HIV
positive MSM who reported unprotected sex, and HAART provided an added rationale for
sex without condoms (Remien, Halkitis, O’Leary, Wolitski & Gomez, 2005). A
meta-analysis also indicated that the likelihood of unprotected sex was higher among HIV
positive persons who believe that HIV transmission is less likely if they are receiving
HAART (Crepaz, Hart & Marks, 2004). In treatment optimism scales, susceptibility (beliefs
that since we now have effective treatment, HIV is less transmissible to others) was
significantly associated with sero-discordant unprotected anal intercourse (Brennan et al.,
2010).
In the current study, even though most respondents (41/45) were newly diagnosed
HIV positive, some of them needed to take ART just after they were diagnosed. The
perception of treatment optimism has been emerging, which has been presented as the
emotion of hope in the chapter on psychological and mental health. Treatment optimism
will be an emerging issue when more HIV positive people are taking ART. When virus load
is lower than 500, the general machine cannot detect HIV anymore, and the test result will
be HIV negative. This is so-called “zhuan yin” (changing to be negative) used by some
respondents. But actually HIV is still transmissible. Therefore some HIV positive MSM
think that it is not easy to transmit HIV to their partners when they practise UAI. Moreover,
personal low risk perception of HIV transmission from “0” to “1” is another special risk
conception that influences UAI.
273
6.10.3 Critical views on some practices
Sero sorting
Sero sorting here is defined as HIV positive MSM seeking HIV positive partners. In
the US, sero sorting is a common HIV prevention practice, with 21% to 62% of both HIV
positive and HIV negative MSM reporting sero sorting to reduce HIV transmission risks
(Eaton, Kalichman, O’Connell & Karchner, 2009). However, barriers to serostatus
disclosure such as stigma and lack of communication skills seriously impede the
effectiveness of sero sorting among HIV positive men. As many as one in three HIV
positive MSM engage in UAI without ever disclosing their HIV status to their partners
(Eaton, Kalichman, O’Connell & Karchner, 2009). Sero sorting has been shown to offer
MSM limited protection from HIV (Golden, Stekler, Hughes & Wood, 2008) and other STDs
(Hart & Elford, 2010). In the current study, attention to cross-infection, instead of sero
sorting, has been actively highlighted and promoted by health care providers and peer
volunteers to the newly diagnosed HIV positive MSM population in Shenzhen. As
presented in the aforementioned section on sero sorting, practically speaking, it is not
realistic to do so insistently, since disclosure is still a big obstacle among newly diagnosed
HIV positive Chinese MSM. It is therefore better to emphasize cross-infection as a public
health strategy at the very beginning when these men are newly diagnosed. HIV
prevention should not be separated from STI and STD prevention, especially among HIV
positive MSM.
Strategic positioning
In the US, a pattern of strategic positioning—HIV positive MSM reporting a higher
274
prevalence of receptive UAI than penetrative UAI with HIV seronegative partners—was
found when HIV positive MSM were uncertain about the serostatus of their partners but not
when partners were perceived to be HIV positive (Crepaz et al., 2009). Strategic
positioning is regarded as an intentional and deliberate HIV-related harm reduction
practice (Van de Ven et al., 2002). And it is also regarded as a back-up strategy to sero
sorting in terms of reducing the likelihood of HIV transmission to partners at risk (Parsons
et al., 2005). However, in the current study, this pattern is not clearly presented, even
though some respondents who reported practising UAI explained that in the UAI in which
they performed being penetrated they felt it a low-risk way of transmitting HIV to their
partners. But they did not deliberately change their sexual position preferences from
performing penetration to being penetrated. Explanations can be found from tongzhi
subculture in contemporary China where versatile sexual roles and practices are not as
popular as that in the US. In other words, more MSM in the US practice both sexual roles
of penetration and being penetrated, while Chinese MSM practice less versatile sexual
roles. As it has been testified to that sero sorting and its backup of strategic positioning
provide limited protection in preventing HIV transmission, strategic positioning should not
be promoted among MSM in China.
Assumption of sexual partners’ serostatus
Studies show that the majority of HIV positive MSM report that they assume that the
HIV status of their sex partners is HIV positive (Parsons et al., 2006; Fisher, Purcell, Hoff,
Parsons & Leary, 2006). An ethnographic study among HIV positive MSM seeking
treatment for STI showed that they thought that their partners should ask for their HIV
status, and many assumed that if they were not asked then their partner must be HIV
positive (Gorbach et al., 2004). These assumptions provide a rationale for these men to
275
practice UAI to some degree. However, there is a significant difference to the current study
in that no respondents (who did not have sero-concordant partners) regarded their sex
partners of HIV positive status when they had sex. Many respondents never thought that
they would get HIV infected before they were diagnosed, and HIV positive people have
been generally regarded as very few. This is a good situation that can facilitate carrying out
health education to enhance HIV positive MSM’s attitudes and motivations of not
transmitting HIV to others.
6.10.4 Emerging positive experiences from Shenzhen
Social support and self-care
Most international studies focus on risk factors related to HIV-risk behaviour.
However, few studies investigate fully protective factors associated with safer sex, such as
condom use. A study in the US found that having social support for safer sex and positive
peer norms predicted avoidance of UAI among HIV positive MSM (Forney, 2008). One of
the important additional pieces of knowledge that the current study added is that protective
factors related to safer sex have been equally evaluated. The majority of HIV positive MSM
practise safer sex with their partners and it is therefore equally necessary to pay attention
to their experiences and interpretations of safe sex practices, which will provide rich
information for promoting safer sex practices. Even though social support and peer norms,
which are presented as well-developed volunteerism in Shenzhen, are still meaningful for
Chinese HIV positive MSM, self-care has been emerging as an important protective factor
in safer sex practices. In a supportive environment, self-care is a presentation of
reestablishment of self-esteem and dignity. The illness experiences of HIV positive can be
used as a source for personal growth. And a reciprocal desire to protect others and oneself,
276
integrating social responsibility and personal needs of love and altruism, also practise
significant influence in safer sex practices.
Self-protection and volunteerism
Self-protection is an important indicator that HIV positive MSM have adjusted to
their situation of being HIV positive and rebuilt their identity and self-esteem. Those
respondents who expressed a strong desire to protect themselves generally had good life
management and awareness of avoiding infection by other viruses or diseases. Protecting
others was also widely practised by respondents, which is not only about helping others,
but essentially is a kind of self-help and self-release. Many respondents realized that to
protect others is actually a kind of self-affirmation. These respondents who had a strong
desire to protect themselves and others reported practising condom use consistently.
Condom use has been constructed as the norm of responsibility in MSM volunteer
circles. Volunteerism has endowed volunteers with ‘xian jin xing’ (先进性 advanced
nature/civilization), which is a powerful discourse in China. To be a volunteer means that
you need to be civilized/advanced and other people will also suppose your behaviour is
civilized/ advanced. Therefore, condom use has been constructed as civilized/advanced
behaviour, and it has been generally accepted in volunteer circles. ‘you ai xin’(有爱心
affectionate) is another strong discourse in volunteerism. Those active volunteers who are
also HIV positive internalize this discourse that ‘I am an affectionate person’. In practice,
they develop skills of negotiating condom use with their partners and take action to do
something to contribute to the MSM community.
277
Summary
Maintenance of safe sex behaviour is not the single determinant; instead it is
associated with multiple factors that are embedded in personal encounters and the
socio-ecological system around respondents. Those respondents who insisted on condom
use after becoming HIV positive shared some common characteristics. They were mostly
taking part in volunteer work on HIV and MSM issues and were under social surveillance in
MSM circles or HIV positive groups. They disclosed their condition to some persons
(significant others), such as HIV positive peers and some trusted general MSM peers and
friends. They obtained social and psychological support from peers, friends, grassroots
organizations and NGOs. They had clear awareness and knowledge about HIV/AIDS.
They attributed clearly their HIV infection to their own behaviour and regarded it as their
own responsibility. They adapted to the diagnosis and were in a balanced peaceful
psychological and mental health status. They had stable jobs and incomes and did not
present much life stress.
In sum, a dynamic framework is necessary to look at the sexual behaviour of HIV
positive MSM. It is general that an HIV positive MSM negotiates with or navigates within
multiple influential factors/discourses. And there are some triggers that push HIV positive
MSM to practise unprotected sex. The public expectation for a linear change from
non-condom use to consistent condom use is problematic. An implication is that
sustainability at both personal and environmental levels are crucial for sustained behaviour
change to safer sex practices.
278
6.10.5 Service implications
Through the above discussion, positive and negative factors associated with sexual
risk have been identified in a socio-ecological framework. It indicates that multiple levels of
strategies or measures need to work together to address the issue of sexual risk in HIV
positive MSM.
Improvements needed in health care institutes
Improving VCT in the CDC
Since
emotional
and
psychological
factors,
misconceptions
about
HIV
transmissions, and fear of losing partners have been identified to be associated with UAI, it
points to the importance of providing sufficient counselling. Improving current VCT in the
CDC system is therefore highlighted again in addressing sexual risk behaviour, and it must
specifically target some problems that HIV positive MSM encounter, such as psychological
and mental health problems of fear, anger, revenge, depressed mood, weariness, and
being psychologically burned out, and a number of misconceptions, such as strategic
positioning and “zhuan yin”. The current post-test counselling and follow-up counselling
need to be upgraded. In order to have a better effect, cooperation between the CDC, KN
Hospital, SRW and HPG is necessary, since KN Hospital can provide more professional
counselling to address psychological and mental health issues, relationship therapy
included, and the SRW and HPG can provide more peer-based health education and
social support in the MSM community and HIV positive groups.
The practice of “gao zhi” (informing) in the CDC is a good way to convince HIV
279
positive MSM information and to be responsible. But in practice, it faces difficulties. For
example, when newly diagnosed HIV positive, many respondents were emotional or numb
and they paid less attention to this “Informing Letter of HIV Positive Result”. Later, peer
workers or volunteers reminded respondents of the HIV/AIDS-related information in this
letter. It shows that the cooperation between the CDC and grassroots organizations and
NGOs is necessary in order to interpret this letter in different contexts, and it would
generate a better effect.
Sexual health model
In order to build a supportive environment to discourage UAI, facilitate abstinence
and reduce the frequency of risky sexual behaviour, while increase risk perception related
to oral sex, comprehensive sexual health services are required, such as treatments for
erectile dysfunction, anal and oral health checkups and treatments, alternative sexual skills
and healthy sex toy use. This work needs technical support from professional institutes,
such as CD Hospital and other institutes which provide sexual health services, specialist
education, and training of co morbidities. The cooperation between CBOs (e.g. SRW and
HPG), health care institutes (e.g. CDC and CD Hospital) and academic institutes (e.g.
CUHK and a newly setup medical school in Shenzhen) is important.
A sexual health model (Robinson, Bockting, Rosser, Miner & Coleman, 2002;
Rosser, Coleman & Ohmans, 1993) has been developed in the interventions for HIV
positive MSM and it can be adopted in China. This approach conceptualizes unsafe sex as
possibly symptomatic of other underlying sexual concerns, such as less safer sex
intentions, poorer sexual health, discomfort with sexuality, internalized homonegativity,
lack of altruism, and lack of condom self-efficacy (Rosser et al., 2010). The arrangement of
280
this sexual health model includes seminars conducted as a 2-day curriculum using
lectures, panel presentations, videos, music, exercises and small-group discussion;
principles of systematic desensitization to facilitate open, frank and explicit discussions
about sexuality; and 3 to 12 months of follow up. This sexual health model was employed
in the US and at the 12-month follow up, MSM in the contrast arm reported a 29%
decrease in condom use during anal intercourse, compared with an 8% increase among
men in the intervention arm (t=2.55; P=0.015) (Rosser et al., 2010). A sexual health
approach can achieve better results in reducing high-risk behaviour among HIV positive
MSM than a video-based HIV prevention intervention, and interventions which target HIV
positive MSM exclusively are more effective in reducing high-risk behaviour of HIV positive
MSM than HIV prevention interventions designed for all MSM (Rosser et al., 2010).
Shenzhen CDC should work together with CD Hospital and SRW/HPG to carry out the
aforementioned activities to reduce sexual risk among these men through improving their
sexual health.
Improvements needed in MSM communities
Tongzhi sauna improvements
The current study showed that UAI happened more frequently in Tongzhi saunas. In
terms of physical setting in saunas, it is generally dark and quiet, especially in the small
dark rooms where sex happens mostly. This physical environment needs to improve, such
as installing some dingy yellow or light pink lamps in their small rooms. On one hand it can
enhance the visibility and facilitate condom use, and on the other hand it can create a
colourful ambience, making it more desirable. In order to make condom use more
convenient, small bags with condoms and lubricant should be placed in these small rooms.
281
Putting some neon lamps in the shape of a condom on an erect penis in these rooms
would also be a helpful reminder of condom use in a sexy and fun way.
In terms of symbolic space, saunas have been constructed mainly as places where
MSM can release their multiple stresses through having sex. Tongzhi saunas, as important
components of MSM communities, heavily depend on its function as a sexual venue, and
its function of recreation and entertainment need to be developed. To improve an old
tongzhi sauna into a comprehensive tongzhi centre is on schedule in Shenzhen, and it
aims to enlarge its physical exercise function, such as repairing the swimming pool, table
tennis facilities and gymnasium.
Tongzhi subculture building
Negative views of no responsibility to protect others and comparative moral
judgment of some men deserving getting HIV infected have been presented in the current
study. Tongzhi subculture building therefore needs to be addressed, and being a
responsible tongzhi should be a highlight. It is a kind of self-esteem establishment, through
which MSM can build up a reciprocal idea of protecting others and oneself, and enhance
the notion that by protecting others one is actually protecting oneself. Another highlight
should be the cultivation of “ai xi” (爱心 affectionate), which is crucial to address the fact
that some HIV positive MSM think that some other MSM should be punished as well since
they also have done something bad. A universal affection should be promoted so that no
one should be hurt by HIV.
This tongzhi subculture building seems very difficult to achieve in practice. However,
something has been going on in Shenzhen. Volunteer work is an important practice. Some
282
respondents said that through taking part in volunteer works they recovered from the
diagnosis of being HIV positive; reinforced their self-affirmation of being a kind person and
therefore built up their self-esteem and dignity; and realized protecting others is essentially
self-protection and self-help. Therefore, volunteerism should be a core component in MSM
community establishment, and mutual help and support should be an emphasis. Shenzhen
CDC should work closely with SRW/HPG to develop diverse volunteer works to recruit
diverse MSM and HIV positive MSM, which actually is an important way to build up a
positive and reciprocal circle of helping others and obtaining self-help.
HIV positive group’s establishment
Since some HIV positive MSM did not want to go back to general MSM
organizations or groups after being diagnosed HIV positive and many of them felt more
comfortable in HIV positive groups, HIV positive group establishment is therefore another
key component. HIV positive groups are largely underdeveloped in China, and very limited
resources are provided to them. The central problem is that their relationship with the CDC
is not close. A strategy for the CDC should be to provide some appropriate funding to
encourage both general MSM groups and HIV positive groups to work together on projects
or services, such as helping newly diagnosed HIV positive MSM change their identity from
being HIV negative to HIV positive.Even though sero sorting is just partially effective in HIV
prevention, the establishment of HIV positive groups can help some HIV positive MSM to
look for sero-concordant partners, and address their needs of emotional attachment and
social belonging. Moreover, peer sharing, small support group sharing included, can also
be used in sexuality and sexual health education among HIV positive MSM, where they
can fully discuss safer sex skills, condom use negotiating skills, intimacy and relationship
development skills, strategies in disclosure and enlarging social support. Safer sex should
283
be promoted as a self-care strategy and a daily hygiene practice, not just as an HIV
prevention measure.
Improvements needed in social structures
A lack of effective law enforcement and legal regulations against deliberate HIV
transmission has been complained by some HIV positive MSM in the current study. The
CDC and CBOs should consider providing guidance and help in how to prosecute those
who maliciously transmit HIV to others. It has been identified that some HIV positive MSM
fear getting into trouble in relation to the issue of HIV transmission and then give up UAI,
and some respondents realized someone deliberately transmitted HIV to them but they did
not know how to prosecute them, which generated their negative emotion of unfairness,
anger and revenge. For example, they wondered whether they can obtain enough
evidence to prosecute the one who deliberately transmitted HIV to them; who they can turn
to for help; whether there is any resource to facilitate this legal action; and how do they
protect their privacy. This indicates that the CDC and CBOs need to cooperate with law
enforcement agencies to develop a list of guidance to establish more serious legal
enforcement to prohibit malicious HIV transmission.
284
Chapter 7 Health service seeking
This chapter explores issues of health service seeking among newly diagnosed HIV
positive MSM. Firstly, problems, adaptation processes and unmet needs are explored. And
then, related negative and positive factors are identified and organized within a social
ecological framework. Later a summary of the data and discussion of challenges,
measures, and implications are provided.
7.1 Problems identified in health service seeking
Non-uptake of free health services
In the HIV diagnosis process, MSM need to go through two HIV tests, a screening
test, which can be done at a district level CDC or some CBOs, and then a diagnostic test
done in the Shenzhen CDC to confirm the result of the screening test. For those MSM
diagnosed HIV positive, they generally need to go to the Shenzhen CDC to take a CD4
count test every six months or virus load test once a year, and those HIV positive MSM
who are taking ART go to DH Hospital to have regular tests, including CD4 count test and
related physical check, every three months. Some respondents (3/45) reported not taking
these tests in the follow up after being diagnosed HIV positive, even though these tests
were free of charge. And some respondents (2/45) did not want to have free health
services in other health institutes, such as TB checks.
Wei was a Uygur young man and his mandarin was not fluent. He took up HIV
antibody testing with the help of volunteers in the SRW and was diagnosed HIV
positive. But he did not understand what was going on and did not take any tests
for CD4 count and virus load.
285
Jian perceived himself as healthy and felt no need to take the CD4 count test yet.
Kong received a CD4 count of 213 and virus load of 100,000 after the diagnosis,
but he did not go back to take the CD4 count test again as an item of follow up
three months later. He explained, “anyway I feel fear. I dare not think too much
about this thing. I even dare not go to take the CD4 test…I fear my CD4 count
could be very low and I would have a feeling of dying soon.”
After HIV positive cases are diagnosed, CDC staff need to telephone them to
follow up their current health situations and related issues every six months. But
the rate of no follow up was very high. For example, in L district, 26% (120/460)
failed to be followed up. A CDC staff member in B district estimated that 30-40%
do not attend follow up. Another CDC staff member in F district said about 50%
(100/200 above) do not.
Some respondents even did not go to have the TB check even though it was free
after they were newly diagnosed HIV positive (e.g. Yan and Han).
Some respondents (3/45) tested HIV positive in a screening test, but they did not go
to the Shenzhen CDC to undergo a diagnostic test, even though it was free of charge, and
they treated themselves as being HIV positive. For those men who did not complete the
diagnosis process, they could not register at the Shenzhen CDC, and therefore they could
not be provided free regular follow-up services, such as CD4 count test and virus load test.
Ge feared disclosure and therefore did not take a diagnostic HIV test in the
Shenzhen CDC until he developed serious pneumonia five months later and was
hospitalized. And then he was diagnosed positive in this hospital.
Lv refused to have a diagnostic test because he had heard that the CDC did not
protect confidentiality and privacy well and someone diagnosed HIV positive had
been disclosed to his neighbourhood by CDC staff which caused serious problems,
and he therefore felt afraid about having a diagnostic test.
Fan was a special case. He feared disclosure and he therefore did not undergo
the second test to fulfil the diagnosis. But he paid for a CD4 count test in another
hospital every three months.
286
Being refused health services
Many hospitals screen HIV for clients who are regarded as high risk without their
informed consent. If they find patients are HIV positive, they may refuse them medical
services. Some respondents (e.g. Zheng and Jin) had such experience of being screened
and refused. The hospital’s general excuse was that their medical instruments or machines
were limited and could not provide medical treatment to them. Some respondents
therefore had to visit small hospitals and did not disclose their seropositive status to
physicians, and then they received treatment. Being HIV positive reduced the respondents’
negotiation power with health institutes, since they feared disclosure. After being refused
medical treatments for STDs and anal diseases, Zheng and Jin had to keep silent even
though they were angry with these hospitals because they worried about their condition
being disclosed once they complained about these hospitals.
Jin was refused medical surgery for an anal fistula after he tested HIV positive in
several big hospitals. And these HIV tests were taken without obtaining his
informed consent. This was not a single case, since an experienced peer worker
also reported several HIV positive MSM having the same problems.
Zheng was refused medical surgery and treatment for STDs after he tested HIV
positive and the HIV screening were not performed with his informed consent.
Zheng did look for help from the CDC in his hometown, and CDC staff there did try
to negotiate with the hospital. But they failed to do so. From the point of view of
CDC staff, it’s usually difficult for them to negotiate with hospitals, especially big
hospitals, since they are powerless to push them to provide medical surgery to
PLWH.
Reluctance in seeking health services and psycho-social support
The China government provides “four free and one care” to PLWH. Nine
287
respondents were taking free ART and related free physical checks, such as CD4 count
test and virus load test. One respondent (Kong) reported needing free ART but was not
given it. Generally after a person is diagnosed HIV positive, the Shenzhen CDC collects
this person’s related information, such as personal ID, home address and phone number. If
this person is eligible (for the detailed criteria for eligibility, please see Chapter 4) to receive
free ART in Shenzhen and cooperates well with the CDC, he/she will be automatically
provided free ART when necessary. If this person is not eligible, he/she will be told to go
back to the local CDC where his/her Hukou (户口) is located for related free services.
Some respondents did not want to go back to their local CDC and felt hesitant about
applying for free services, such as free ART or basic living allowance. Some respondents
did not look for related services or support in grassroots organizations, even though they
needed social support.
Kong’s CD4 count was only 213, but he hesitated to apply for free ART in the CDC
in his hometown, since he was required to submit a testified certification from local
government which would disclose his seropositive status in his hometown.
Based on the Four Free and One Care policy, PLWH who are in poverty can apply
for the basic living allowance. But Zhang felt helpless on the basic living allowance,
since it just provides a few dozen RMB per month.
Even though some respondents reported lack of friends or HIV positive peers and
expressed a need for social belonging and supports, some of them did not want to
look for help or support from grassroots organizations or HIV positive groups (e.g.
Shen, Han, Xu and Kong).
Lack of professional support in alternative medication seeking
Even though ART is much more accessible, its side-effects pushed some
respondents into searching for alternative medication that had fewer side-effects.
Traditional Chinese Medicine (TCM) or folk prescriptions were regarded as options. Kong,
288
Xu, Feng, Tao and Hei were all looking for or trying TCM that was said to be helpful in
controlling HIV or enhancing CD4. But all of these alternatives did not have professional
support, such as counselling from related physicians or TCM practitioners.
7.2 Processes of adaptation
Seeking free ART
HIV positive MSM became active in searching for free ART after they understood
that free ART provided by the government was real and helpful.
In a group discussion with CDC staff, Staff Y said, “Those who came to us for
treatment last year were mostly ‘nantong’ (男同 MSM). They came to us actively”;
and Staff Z said, “last year (2009) I worked very hard to look for patients. This year
the situation changed and patients are desperately looking for me.”
This was mentioned by the respondents, since most of them were actively looking
for free ART, even though many of them did not need it immediately. But they
would like to have a free ART card (this card is authorized by the Shenzhen CDC
for some PLWH, so that they can apply for free ART in case of necessity). Nine
respondents were taking free ART. Sun asked whether the free ART card he had
months ago was still effective.
Needs and adaptations over time
When the respondents were in different stages, their needs and comments in
relation to health care were different. At the moment of diagnosis, they generally needed
more immediate social and psychological support. Most respondents needed someone to
talk to at this stage. And they generally chose the people they trusted.
289
Experienced senior volunteers and peers who have been working closely with
MSM populations for years were regarded as reliable for some respondents, such
as Ren, Han, Jian, Yan, Xu, Xie, Qi, and Zhu. All of them firstly chose a senior and
very experienced volunteer to talk to after they were newly diagnosed HIV positive.
This senior volunteer said, “We have had many years of communication and
interactions (with the community). They treated me as a lifesaving plant. They
trusted me and viewed me as their backbone.”
CDC staff also witnessed that “some of them did have a very strong desire to pour
out their own bitterness” and “many people (PLWH) needed a kind of
psychological institute (to help them). They always telephone me and chatted with
me for half a day, or came a long way to visit me and talked to me, or phoned me
every day”.
After respondents got to know HIV positive peers or groups and communicated with
health care providers (e.g. CDC staff or hospital physicians) and NGO volunteers, they
gradually had clearer ideas of what they needed, such as CD4 count test and virus load
test. When they needed to take ART, they paid more attention to physical checks, ART and
the related side-effects, health maintenance, and medical insurance.
Zhou was a typical case. When he was newly diagnosed HIV positive, he said, “I
was resistant in mind…the doctor always telephoned me and asked me to have a
retest. But I had a very bad attitude to her…later, I straightened out my thinking
and went back to have a retest, it was therefore diagnosed as HIV positive…no
one wants to die! Really, no one would want to die at such a young age…after
struggling for four or five days, I thought it was necessary to have a retest; maybe I
can prolong my life.” He further described, “her (the staff) tone was very gentle and
soft, and I felt she would not discriminate against me. At least I felt
respected…because my CD4 count was only 180, if not taking drugs (ART), they
said, it would endanger my life. I then started to take it strictly following their
guidance (of how to take ART)”. And Zhou also regularly went back to DH Hospital
to have free physical checks.
During my fieldwork, generally when respondents were diagnosed HIV positive,
CDC staff, doctors or other health care providers and volunteers would comfort
them first and remind them of what matters needed attention, such as regular
sleep, balanced diet, physical exercise, and most importantly maintaining a good
290
mood and a positive world view. And HIV positive peers would share with them
their own experiences of how to manage HIV/AIDS and introduced them to HIV
positive groups. Accompanied by friends, peers or volunteers, they gradually
learned to manage their life being HIV positive, attended collective activities and
built up confidence, and then gradually went back to a general social life.
Unmet needs Identified
Need for health guidance
Newly diagnosed HIV positive MSM generally had limited information or knowledge
of HIV/AIDS-related health services, and their expectations were also not clear at the
beginning. They need some guidance.
Qi said, “I hope someone can provide us advice because I am really not clear
about this disease. A lot of stuff is on the Internet, but it is not necessarily
professional. We need some professionals to provide us guidance, such as what
matters need attention and how to self-rescue.”
In a focus group, volunteers justified that HIV positive MSM needed health-related
information and knowledge. They mentioned, “We should transmit more health
benefit information to them, such as CD4 count” and “HIV positive people need
professional training (of how to manage HIV/AIDS).”
When asked about what services he received, Chen felt a bit stunned, and said,
“What services? It’s just a free CD4 count test, and nothing else”, and Qian just
made a very short and general comment—“not bad”.
Li was a typical case (A is me and B is Li):
A: Are you satisfied with their services?
B: There are no services at all, but I feel good.
A: What should be done for PLWH?
B: I have no idea what should be done. It should be self-protection and improving
immunity and physical health.
291
Need for improved services
Some respondents reported dissatisfaction with the services in the CDC and
hospitals, and asked for improvement of these services, in terms of longer service time,
privacy protection, improved follow-up and better service attitudes.
Sun said, “the services need to be improved…in terms of service time, as the Love
Clinic is only open in the morning on Monday, Wednesday, Friday and Saturday.
It’s not convenient.” Zhu provided a similar comment, since many respondents
needed to spend a long time on public transportation to visit DH Hospital.
Zhou pointed out, “I think it needs to protect privacy”. In a focus group, volunteers
also realized that confidentiality was crucial in the work and health care related to
HIV positive MSM.
Some respondents pointed out the need to improve the follow-up services. Feng
mentioned, “I had a CD4 count test this time and it was just 121. The staff in the
office did not even remind me to take ART. The CDC was irresponsible.” Tao and
Wang reported that they did not received follow up from the CDC or other health
care institutes after diagnosis.
Chen said, “That is just their job, no emotional attachment, and they just want to
finish their job…For the services for PLWH, it’s just free testing, nothing else.” And
he also made a comment to volunteers that “they just feel they want to be a
volunteer, but their distance from PLWH is very clear. They just feel ‘I go to help a
group of people in need who I don’t understand at all, and this thing doesn’t have
any relationship to me’. ” These comments point out that the attitudes of health
care providers mattered so much for the respondents.
Need for improved quality medicine and better access
The respondents needed advanced and good quality medicines and more options.
They expected to have more options for free ART as well, since there were only five types
of drugs in the free ART scheme, and it was reported that some of these drugs were
domestic drugs and had worse side-effects. These experiences were shared among HIV
292
positive groups and peers. Experienced PLWH who had taken ART for quite a long time
were usually the important sources of treatment knowledge. Some respondents expressed
their expectation of a flexible way of accessing free ART, since the Hukou fixed ART
distribution (PLWH need to take free ART in the CDC where their Hukou is located) is not
convenient for migrant workers.
Jian said, “I don’t know whether they provide the most advanced medicines to us.
They may only provide domestic medicines and there may be a certain difference
compared with world class treatments. …What is the quality of these medicines?
Every PLWH may want to know about this.”
In a focus group, volunteers testified to respondents’ need for free ART. The SRW
had some quotas of free ART available for those PLWH who are not eligible for
free ART in Shenzhen. The use of these quotas was quite dependent on the
leader of the SRW, and he tried to use these quotas to encourage HIV positive
MSM to cherish these limited resources and do something to contribute to the
MSM communities.
Shen said, “It should be better to unite it nationally so people can access the
medicines (ART) in different places, and it just needs their ID card and records
once every month. It should be convenient.” Jiang also expressed similar
expectations.
During my fieldwork, a chief physician in DH Hospital confirmed some side-effects.
I also met an HIV positive MSM who was taking free ART in Shenzhen, and he
suffered from fat-transfer, a kind of side-effect of a drug under the free ART, and
his face became unbalanced and ugly. Finally he lost his job. Feng also suffered
from another side-effect of free ART, stomach ache, and he hoped to change the
package of ART he was taking.
Need for social support
Psycho-social support was required by the respondents, so that they can have
someone to talk to or consult HIV-related information or knowledge.
293
Xie said, “Actually what I need most, many times, is that I have a lot of words from
my heart and I don’t know who I can talk to. My colleagues and friends are all
normal people, and it’s impossible to have deep discussions. I can only oppress
myself, and am very gloomy.”
Feng said, “I hope to look for patients (HIV patients) in Shenzhen since they have
experiences and know how to go through it. I don’t know about where the (HIV
positive) groups are and therefore look for them on the Internet.”
A senior volunteer expressed his view based on his years of experience of working
with HIV positive MSM that “they have no choice and life goes on (they need to
survive in society). They isolate themselves. Sometimes when they disclose their
condition to someone, they become alienated gradually or break off their
relations…After years of communication and interactions in the community, they
treat me as a lifesaving plant. They trust me and take me as their backbone” and
“what kinds of care and aid can they receive?”
In a focus group, volunteers justified that HIV positive MSM needed social
acceptance. “I think we can also initiate a list of social activities and recruit
volunteers, friends in qq groups, and invite them (HIV positive MSM) to join us.
And let them fit into our group.”
Need for social welfare
Some respondents expressed their expectation of social welfare, such as job
security, medical aid and basic living allowance. But these are difficult to be addressed in
their reality.
Shen described the importance of addressing their real life hardship, “It may be
because they are contradicted in their job, and they are then not satisfied with
society. But we volunteers are a group and we can help each other and help
people look for a job, address their basic life needs, and change their living
situation. That’s a realistic issue. Once they address these issues, they would not
have this non-satisfaction.”
Fang asked for a job, and he had been jobless for quite a while. Based on my
interaction with him in my fieldwork, I could perceive his emotion of
“non-satisfaction”.
Zhou had been working part-time for quite a long time, and he expected to have a
294
stable job. He sustained an injury to his feet, but he could not afford to see a
doctor and he did not have any medical insurance.
Hei contracted a kind of skin disease but he could not afford to see a doctor and
he did not have even the basic migrant workers medical insurance.
You worried a lot about the potential huge expenditure on medical care.
Zhang expected that some fees for medical treatment could be waived, a kind of
medical aid. And he also expressed the need to improve the level of basic living
allowance for PLWH in need.
During my fieldwork, I was told in the SRW that the Red Cross Association
provided some quotas of living allowance valued at RMB2,000 per person per
month to PLWH in need. But the coverage of this financial aid was very limited and
just covered around 20 PLWH in total.
Psychological and mental health needs
Some respondents pointed out the need for care about psychological and mental
health issues (for details please see the chapter on mental health).
Xie said, “Some may be not optimistic and want to commit suicide, or have a kind
of extreme psychology or revenge emotion. And someone in the CDC looked like
they discriminated against patients.”
Shen mentioned PLWH need to be cared for by our society. Many respondents
had less concern for their psychological and mental health status, since they had
low awareness of these issues. But they did describe suffering and hardship in
their narratives
295
7.3 Negative factors associated with health service seeking
7.3.1 Individual factors
Absence of health service concept from the perspective of HIV positive MSM
A concept of health services from the perspective of HIV positive MSM was absent.
Many respondents did not have their own idea about health services at all and they did not
realize that they could ask for or express their own ideas about and need for health
services. For health care providers, such as staff or workers in the CDC, hospitals and
health centres, the concept of “fu wu” (服务 services) needed to be strengthened. In
Shenzhen, many of the things which they provided to the MSM population were free,
including free VCT, free condoms and lubricants, free ART and related physical checks.
Some staff perceived that it was just their job to provide help to the MSM population to
control the HIV epidemic.
A CDC staff member said, “Honestly speaking, no one wants to have contact with
PLWH…it is very stressful and agonizing …by taking this job, our salary is fixed.
To do fewer things is better than to do more.”
In the SRW, the leader and the volunteers also generally perceived their work as a
kind of charity. “gong yi(公益 public welfare)” and “neng jiu yi ge shi yi ge (能救一
个是一个 just to save people as much as we can)” were the frequently used
phrases by the leaders and volunteers.
The power relationship between HIV positive MSM and health care providers, which
was described in the narratives of respondents, CDC staff and NGO leaders, can provide
dimensional hints to understand the absence of health service ideology. Free ART is not
provided to HIV positive MSM as a kind of free service; instead it is a kind of incentive or
296
‘public welfare’ for migrants.
Fang said, “I heard that doctors are so tough. We have to do what they tell us to do;
otherwise our medication card would be stopped. They threatened us, because
we are non-locals. If we were local, they cannot treat us like that.”
Staff Q said, “for special groups (PLWH who are not eligible for free ART in
Shenzhen), when we conduct investigations and find out someone is HIV positive
and needs treatment, if they cooperate with us, we try our best to help them,
providing free treatment.”
Mr. K said, “Only when they contribute to the community, do we provide free ART
to them, since the resources are limited. We want to encourage more HIV positive
MSM. It’s a kind of public welfare on the one hand, and it’s to encourage other HIV
positive MSM and let them cherish this quota on the other hand.”
Attitude of this is just a “a job, a business, but apathetic relationships”
Based on the interviews and observations, some CDC staff presented a lack of
professional empathy towards PLWH, HIV positive MSM included. They did not have too
much feeling about them. Or they just viewed it as a business. Or they lacked
understanding of MSM subculture. This was different from expectations of some HIV
positive MSM.
Staff Y said, “We become insensitive. In our eyes, they are all PLWH, not too much
different…they are a high-risk population.”
A staff member in a district CDC said, “If we go to MSM venues, we need to worry
about our own safety. Our leader reminded us ‘don’t lose ourselves in order to
finish our workload.’” And he further talked about his contact with an MSM
grassroots organization that “we contact them (SRW) just for our work.”
The respondents felt this as well. Yang said, “It’s just their job, a kind of optional
work. Only conducting tests and nothing else, and they do not explain everything
to you very clearly.” Chen said, “That is just their job, there is no emotional
attachment, and they just want to finish their job.”
297
But CDC staff have their own opinions as well. A staff member in a district CDC
explained her view that “I have my private life. If at midnight someone telephones you to
pour out their grievances or tell you he/she wants to jump to their death, what should I do!
Anyway, in Shenzhen it is unusual to provide our private mobile phone numbers….In my
private time, I don’t want to work. I therefore provide them my office phone number. Very
few people ask for a mobile phone number, maybe just one or two people.” Two staff in the
district CDC mentioned that they gave their personal mobile phone number to several
PLWH really in need and had several contacts with them after work. One staff member
viewed it as a kind of “Lin Zhong Guan Huai (临终关怀 terminal care)”, so that he provided
his personal mobile phone number to them. Another staff member gave her mobile phone
number to those PLWH who really cooperated well with her.
Low awareness of health issues
The respondents generally had low awareness of their own psychological and
mental health, oral health, and other infectious diseases.
Even though most respondents experienced suffering psychologically or mentally
after being diagnosed HIV positive, few respondents sought professional mental
health services, such as psychological counselling. Only two of them (e.g. Qian
and Wu) went to KN Hospital, a specialized psychiatric hospital, to consult a
doctor.
Oral health was generally ignored, even though oral sex had been widely
practised among the respondents. Some respondents reported blood occasionally
when brushing their teeth (e.g. You & Ge), and some respondents suffered from
toothache (e.g. Hua), and some respondents had ulcers (e.g. Feng), but they paid
less attention to these issues. No respondents reported seeing a dentist to check
their oral health. Only two respondents used mouth wash (e.g. Jiang and Chen).
Some respondents (e.g. Han & Yan) paid less attention to other infectious
diseases, such as STDs, TB and hepatitis C. Jin described what he experienced
298
among HIV positive peers. “All of those internet friends are PLWH. Some of them
may have hepatitis C, and some may have TB, or other diseases. When we have
dinner gatherings, no public chopsticks were used, their interaction was very
intimate, and they did not pay much attention to protect themselves. I feel the idea
of protection and self-protection is very weak in our group. I suggested using
public chopsticks, but they didn’t accept it.”
Low economic status as a barrier to health care
Economic status was an important factor for respondents in relation to accessing
health care and other community services that charged them money. Migrant workers in
unstable jobs suffer more when they contract HIV/AIDS.
Zhou who was just taking a part-time job sustained an injury to his feet and Hei
who was working in a small informal workshop caught a kind of skin disease but
they did not go to see a doctor since they could not afford it. And they never
attended HIV positive group dinner gatherings or KTV activities, since they could
not afford it as well.
Zheng who was jobless wished to join some activities organized by HIV positive
groups, and he liked it. But these activities were partially supported by NGOs and
participants, and he needed to pay a small amount of money. Since he needed to
pay for STD treatment and could not afford this expenditure, he therefore did not
attend these activities.
Shen experienced a dramatic decrease in his life quality after he was diagnosed
HIV positive since he could not manage hard work and his income decreased.
In-patient services in DH Hospital are expensive. Huge medical fees make
respondents (e.g. You, Shen and Zhang) feel terrible, since they cannot afford it at
all.
Fear of disclosure via service utilization
Fear of disclosure of their seropositive status to families or acquaintances through
299
health care providers was an important factor that prohibited respondents from consulting
health services. The reason behind this fear was generally their perceived social stigma
and discrimination against PLWH.
Kong said, “I phoned them (the CDC in his hometown) and asked what I should do.
They even asked me to apply for a certification that identifies my living conditions
as not good and not being able to afford treatment and therefore needing help
from the government. You see, if I do so, other people in my hometown will all
know about me (getting HIV positive). This cannot be exposed. I would rather die
than apply for such a certification. I therefore did not go back to them.”
Fan said, “They (the CDC) told me to go back and have a retest to confirm it. It
needed my ID card. I didn’t do that. I then decided to have tests for my CD4 count
at my own expense every three months. It cost me above RMB100 per month. It’s
still affordable for me. But it’s not necessary to disclose my information at this
stage.” Lv also reported a similar experience and he did not go back to the CDC to
have a diagnostic test.
During my fieldwork, a senior volunteer and a peer worker also agreed that the
fear of serostatus disclosure to CDC staff and then to their families was general
among HIV positive MSM and it therefore prohibited respondents from consulting
health services, such as the test for HIV diagnosis and free ART.
Mental health status as a barrier to health care seeking
Some respondents refused to seek help from the CDC when emotional or in a bad
mental health state. This phenomenon can be confirmed by CDC staff as well.
Zhou said, “I resisted it very much in my mind. She (a CDC staff member) always
asked me to go back to have a diagnostic test. I said I would rather die and I don’t
care. …She called many times. My attitude to her was very bad…Later on I
thought it through and then went back to have the test. I was really diagnosed HIV
positive and later I accepted treatment…My CD4 count was only 180 at that time.”
During my fieldwork, I witnessed Han refuse to provide his information needed for
applying for free ART in the SRW. Based on my interviews and interaction with him,
300
he was in a seriously depressed state at that time.
Staff T said, “It may be about 30 to 40% of people who are diagnosed HIV positive
who change their phone numbers or turn off their phones.” These people didn’t
want to contact the CDC anymore and therefore were lost with regard to follow up.
Perceived low benefit or effectiveness of health services
When respondents perceived low benefit or less effectiveness of health services,
they tended to use it even less, even though these services were free.
Zhang said, “Four Free and One Care means the government provides free ART
and local government provides basic living allowances. You need to go back to
your hometown to apply for it. But it’s just several dozen RMB per month, which is
useless, and even not enough to cover water and electricity fees.”
Jin said, “It seems that they called me once, and just asked a few questions, such
as food and physical health.”
A staff member in a district CDC said that some respondents regarded follow up as
not important, and they felt that CDC staff just asked some simple questions, such
as whether they had regular CD4 tests and whether they were using condoms,
and they felt it pointless.
Perception of sound health status
Those respondents who were self-perceived in a better health condition and higher
CD4 count presented less eagerness and were less active in seeking health services from
health care providers, such as Han, Li, Wei, Dou, Yun, Su, Pan, Fang, and Ren.
301
7.3.2 Interpersonal factors
Negative attitudes toward service providers create barriers
Interactions between health care providers (e.g. CDC staff and hospital physicians)
and HIV positive MSM generally are based on their mutual attitudes. Negative attitudes
created barriers for the interaction between both sides.
Based on my fieldwork, CDC staff Z actually worked hard on HIV/AIDS issues.
Just because some respondents felt her attitude was not so friendly, their
comments to her were not good. Some respondents even criticized that she
discriminated against PLWH.
Xie said, “I just went through the gate, she immediately asked me to wear a mask,
and she herself also wore a mask and gloves. I felt rejected, feeling a bit fearful.
It’s not like what was advertised, like giving you a hug. That’s just an
advertisement.”
Tao complained, “the second time (when I visited CDC), they were not so patient.”
During my fieldwork, I visited the Shenzhen CDC, DH Hospital, and CD Hospital.
But I observed some negative attitudes from CDC staff, such as indifference to
clients and lack of sensitivity to clients’ confidentiality and privacy. This may be
because CDC staff lack systematic and in-depth training on these issues on one
hand, and are burdened with overloaded work on the other hand. The result is that
respondents reported more positive comments to DH Hospital and CD Hospital
than those to the CDC.
Issues over professionalism, trust and understanding
Professionalism was the issue that mattered a lot in the health service seeking
among HIV positive MSM. Some respondents questioned the role of volunteers and
thought they lacked skills or knowledge. Some respondents did not receive effective
medical treatment for some diseases and so they quit DH Hospital which is the only
302
designated hospital for PLWH. Moreover, trust and understanding are also two important
issues that are associated with health service seeking.
Jin left DH Hospital since he felt that this hospital did not provide effective
treatment to cure his anal fistula. DH Hospital is a specialist hospital in treating
infectious diseases, rather than anal diseases. He said, “At the beginning, I was in
DH Hospital. But they didn’t have professional physicians and related medical
equipment. I was just injected with anti-inflammatory drugs…after having these
injections several times, I was still in pain. I got angry, and left this hospital. It cost
me more than five thousand (RMB), but I was not cured. At last I looked for a small
hospital to have surgery (he did not disclose his seropositive status).”
In volunteer focus group discussion, some volunteers pointed out the importance
of being professional which will make HIV positive MSM feel confident around
volunteers. Volunteer X said, “When HIV positive people came to ask something,
they needed very great courage. If you speak hesitatingly or jump from one
subject to another, or don’t know what to say, they will not ask the next questions.
Therefore, the first thing is that we need to be professional in our counselling, and
they then can build up basic trust in us.” Volunteer K realized, “provide them
respect and care, and you will obtain their trust. In order to do so, the first thing is
strict confidentiality.”
Yan was such a case, and he wondered “whether volunteers were professional
enough”.
Even the leader of the SRW was not confident about whether his volunteers could
really protect the privacy of HIV positive MSM and reminded these positive MSM
to protect themselves well. Zhao said, “Mr. K told me that ‘your status is special.
You need to protect yourself well. The SRW has different types of people. If you
tell others you are A (HIV positive), they may spread about, and how can you live.
You don’t understand others and you don’t know what others think about you. You
therefore cannot tell others you are A’.” Zhao pointed out that “HIV positive people
felt fear throughout, and they were still rejected by non-positive people, so they
don’t trust them.”
Some respondents also questioned whether volunteers can really understand
PLWH. Chen said, “They just feel that they want to be a volunteer, but their
distance from PLWH is very clear. They just feel ‘I should go to help a group of
people in need who I don’t understand at all, and this thing has no relationship to
me’. ”
303
7.3.3 Community-based factors
Attitudes toward different health organizations
Respondents generally had better comments in relation to DH Hospital and CD
Hospital. They presented some criticisms to the Shenzhen CDC. It can be seen that the
cooperation of health care institutes and grassroots organizations obtained better
comments and more acceptability. The CDC generally faced newly diagnosed HIV positive
MSM first when they were still emotional, and they took on major responsibilities in
managing PLWH (AIDS patients included), including decision-making with regard to
providing someone free ART or not. This situation and responsibilities made them have a
tense relationship with some HIV positive MSM.
DH Hospital works closely together with a positive group, the HPG. And it obtained
generally good comments by PLWH.
CD Hospital works closely together with an NGO, XY. Some respondents also
provided good comments about CD Hospital.
The CDC was criticized by some respondents. For example, Lang argued with the
CDC for free ART, and Feng criticized the CDC for not reminding him to take ART
even though his CD4 count was very low; Xie criticized CDC staff for not protecting
the privacy of PLWH.
Poor coordination among the CDC, hospitals, CBOs and NGOs
The CDC did not refer newly diagnosed HIV positive MSM to the SRW or other
NGOs since they worried that such a grouping as a united front could create trouble. The
referral relationship or link between the CDC and local NGOs or CBOs was still not regular,
and weak. When the CDC carried out new regulations (e.g. real name registration in HIV
304
diagnostic tests), the CDC did not consult MSM NGOs or grassroots groups.
A CDC staff member had a comment in a focus group discussion that “those
originally extensive soft-spoken and timid patients changed dramatically after
gathering together with them (a positive group).”
Here is a typical case. Yang looked for some organizations through websites by
himself after being diagnosed HIV positive (A is me, and B is Yang):
A：How did you get to know about Mr. K?
B：I got to know him on the Internet.
A：Didn’t you know about him in the Shenzhen CDC?
B：No, I didn’t know and they (Shenzhen CDC staff) never mentioned about that.
A：And then, didn’t they tell you about any other organization?
B：No, never.
Jian was another case. He tested HIV positive when he was hospitalized in a car
accident. The hospital then reported his case to the Shenzhen CDC. But Jian was
not referred to any support groups or NGOs; instead he searched for the SRW on
the Internet by himself.
During my fieldwork, the Shenzhen CDC carried out the real name scheme in May
2010. However, in the process of forming this new regulation, MSM CBOs, NGOs
or grassroots groups were not consulted at all.
The integration or collaborations among health care institutions are not strong and
efficient, even though there is a interdepartmental HIV coordination committee in the local
government. The link between the CDC and other authorities, such as the Bureau of Public
Security, Bureau of Drug Abuse Control, Marital and Child Care Centres, were mostly
programme-based and just occasional. The networking, integration and cooperation
between different health care institutions were still very weak.
A CDC staff member said, “The leaders did not provide strong and practical
support, while we took on many more additional responsibilities.”
A senior physician said, “Hospitals and government don’t have any standard or
guidance for patient referral. It’s just up to the personal behaviour of doctors, such
as referring patients with hypochodriasis, AIDS phobia, anxiety, depression,
305
schizophrenia or suicidal tendency.”
Different grassroots organizations working with MSM and HIV issues did not
collaborate well, and some gossip emerged in my fieldwork, even though it was not the
mainstream situation among MSM communities.
The HPG (a positive group) argued with the SRW about who should play a major
role in PLWH issues. The HPG contended that HIV negative people should not
become involved in the issues of HIV positive people. The SRW argued that HIV
positive people needed social support and could not be separated from others.
During my fieldwork, I got to know that the HPG did not receive any financial or
material support from the CDC, while the SRW received free condoms, lubricant
and IEC materials from the CDC.
XY (an NGO) had a different view of the fast HIV test from that of the SRW. The
volunteer team of CH Foundation did not accept cooperation with the SRW in
co-organizing “Dating the Rainbow”, a collective friend-making activity among the
tongzhi community.
Grassroots organizations, such as the HPG, seriously lack technical support and
financial support, which heavily prohibit its development and restrict their service quality.
The HPG provided PLWH ‘psychological counselling’, but they were not
professionals and had not obtained even the most basic training. For peer workers
like Zhang, they lacked professional psychological support and I witnessed during
my fieldwork that his health status was getting worse, such as easily getting tired
and losing interest. At the end of my fieldwork, he was thinking about taking ART,
since his CD4 count had decreased significantly.
Obstacles to health insurance
Medical insurance is crucial for getting access to health care, since it is very
expensive. In total 44.4% (20/45) of respondents did not have any kind of medical
306
insurance. Many of them were self-financing in health service seeking (e.g. Ge, Wei, Hei
and Fan). Some respondents were covered only for very basic medical care in a primary
health centre designed for migrant workers (e.g. Hua and Xu). After being diagnosed HIV
positive, they could not buy medical insurance—private commercial insurance, since most
commercial companies refused PLWH.
An experienced HIV positive peer worker said, “For medical insurance, many
places (commercial insurance companies) do not accept you since you have this
disease (HIV).”
Another respondent told me in an informal chat that he consulted some insurance
companies and they did not accept PLWH.
This can also be confirmed by a report in the media that “PLWH have no place in
insurance” since HIV/AIDS is still an escape clause (Song, 2009). This means that
if a man has bought private commercial medical insurance and unfortunately gets
HIV infected, the commercial insurance company can utilize the “escape clause”
to return this man his insurance premiums, but will not cover the payment of
claims.
The practical problem of the “Four Free and One Care” policy
‘que zhen’ (确诊 diagnosis) requires an ID card, and a real-name registration
system exists in Shenzhen. Some respondents dared not use their ID and did not register.
Some respondents perceived or criticized CDC staff for not protecting the privacy of
clients.
Fan and Lv heard that some HIV positive peers’ conditions were disclosed to their
families and neighbourhood by CDC staff, and they therefore did not use their ID
to undergo a diagnostic test and register. Lv said, “They (CDC staff) said they
would drive to a place that I felt convenient to conduct the CD4 test for me just in
the car. I agreed. But suddenly I felt something was wrong…they just wanted to
have my ID card, since having the CD4 test requires my ID card. After an ID card
307
event (one of his friends was also diagnosed as HIV positive, but this news was
disclosed by local CDC staff in his hometown and his father drank pesticide to
commit suicide), I ran away to Beijing and they could not reach me. I therefore
immediately called them and said I didn’t need this test anymore. …Until now I
haven’t taken a CD4 test yet, and it has been three months. Oh, my! I feel my CD4
count should be very low now.”
The practices of the HIV Internet Report System (Wang Shang Zhi Bao 网上直报)
has also faced challenges. After a new diagnosis is uploaded onto this report system, it is
open to the local CDC where this person’s Hukou is located. And therefore local CDCs can
obtain this information online and then based on the ‘Four Free and One Care’ policy they
can conduct follow up and visit the home of a person. It is part of their job. But the result is
that some PLWH’s conditions are disclosed to their families and neighbourhood. This
action made many respondents feel terrible, since they had not disclosed their condition to
their families. Conflict between the CDC and PLWH was therefore created.
Xie experienced such tortures since his local CDC obtained his information
through the HIV Internet Report System and they visited his family to follow him up.
Xie therefore reacted violently and told the CDC that he would commit suicide in
front of them.
No registration with the CDC means that HIV positive people cannot obtain free
ART and physical checks. When they accept a diagnostic test, they need to present their
ID card, and their ID and related information is then recorded in the HIV Internet Report
System. It is a kind of registration. Some respondents were still in a comparatively healthy
state and did not register with the CDC, while they obtained related information from
positive groups and managed their own health, such as paying for CD4 tests in DH
Hospital.
308
Fan was a typical case. He did not show his ID card, and therefore he did not
register with the Shenzhen CDC. But he had a close relationship with the HPG,
where he obtained rich HIV-related information and knowledge, and he paid for his
own CD4 test in DH Hospital.
The application of free ART is conditional. First, it requires the applicant to have had
a registered residence in Shenzhen for at least two years. Second, applicants are also
required to have social insurance in Shenzhen (for details please see Chapter 4). Those
who cannot meet these conditions have to apply for it in places, usually their hometowns,
where they registered their permanent residence. Many of them dared not to go back
home. It does happen that some PLWH go to the Shenzhen CDC for free ART but they are
not eligible and then quarrel with the CDC staff.
Lang and his HIV positive peers went to the Shenzhen CDC to ask for free ART.
When their requirement was refused, they quarreled with CDC staff.
7.3.4 Health care institutions-based factors
Tendencies of controlling MSM population
The China CDC system presents some tendencies to control the development of
MSM groups and detach themselves from the social movement. In my fieldwork, the
Shenzhen CDC just provided biomedical services, and worried about getting involved in
social movement on gay rights. They also worried about when HIV positive groups grow up,
they may be strong enough to negotiate with them.
In the focus group discussion, a CDC staff member said, “The biggest worry I have
is that a kind of dissatisfied emotion will emerge among patient organizations or
309
someone may contribute at the beginning but after he accumulates prestige he
may utilize it to negotiate with you or disseminate negative sentiments. That will be
very big trouble. Actually, it is not easy to manage patients.”
They do not seem to direct resources or support to the development of MSM
communities (MSM NGOs or grassroots groups included). And they emphasized that their
job is just to do disease testing and surveillance. They complained they have shared much
more external responsibilities and burdens.
A CDC staff member said, “Our unit was originally an organization for testing, and
now has to share other responsibilities. Those responsibilities that no one takes
care of all fall to us. Patients do not know where they can turn to, and just come to
us for everything about HIV/AIDS.”
On the other hand, it was still very bureaucratic and lacked community participation
in the management of HIV prevention in the CDC system in China.
In an informal discussion, a local CDC staff member gave me an example that the
China CDC is the leader in this system, and they usually send some staff,
so-called “experts”, to conduct supervision in local project sites. This supervision
will affect the assessment of these local projects. Once they sent out staff to
conduct supervision in Shenzhen. However, based on this local CDC staff
member’s thinking, their supervision did not match the situation in Shenzhen.
Even though this local CDC staff member did not provide in detail what happened,
this case called for paying more attention to the ideas from local experienced and
senior experts and community leaders and activists.
CDC staff being overloaded
CDC staff mentioned their work is overloaded. And the grassroots organization
working closely with the CDC also mentioned their heavy workload.
310
A senior CDC staff member said, “I sometime imagine that we can go back to our
original work. Hehe (smiles slightly), based on national regulations, we take on the
responsibility of surveillance and testing. We actively test (the MSM population).
Our workload is very great. Therefore, those newly diagnosed HIV positive MSM
are in the early stage of getting infected.”
On the side of grassroots organizations, they felt tired as well. The SRW leader
said, “It’s very tiring, and volunteer work is overloaded.” When the CDC conducts
HIV test projects among MSM populations, SRW volunteers need to work together
with the CDC, such as recruiting participants and conducting on the spot
questionnaire surveys. They told me in an informal chat that on 18 days of a month
they need to go to different MSM venues at night to conduct these projects, such
as time-location sampling and respondent-driven sampling screening among MSM.
And each time it would take them around three hours. All of the volunteers had
their own jobs, and they used their spare time to work with the CDC on a voluntary
basis.
Lack of resources and capacity
CDC staff realized that they should provide psychological counselling to HIV
positive MSM. But they did not actually do so and they attributed it to a lack of resources,
including human power and funding.
Staff Y said, “Previously our attention to psychological counselling was not enough.
As you know, we are only a few people and do not have enough human resources
to deal with it. Therefore, we sometimes feel very stressed. Who can do this work?
We really want to do it but our capacity has been overloaded. If we initiate NGOs
or grassroots organizations to take this work, I feel the development of NGOs or
grassroots organizations will be very imbalanced…how can we distribute this work?
It’s very difficult to make a policy. I feel at this stage we need to go step by step. It
cannot be rushed. Nantong (MSM) no matter in China or overseas are outside the
mainstream. Anyway, they are a minority and the social stress is very great.”
Staff F said, “In terms of psychological counselling of HIV patients, it’s never
enough. That’s no way to do it. That’s it.”
311
Staff Q said, “the Love Clinic (AIDS clinic) has now accepted several hundred
patients and reached saturation already. The spending on testing in R Hospital is
not calculated together yet…Two years ago we provided treatment to above one
hundred patients, now it has reached above four hundred. Resources are
limited…This year (2010) the nation requires treatment to patients with CD4 less
than 350. We have an indicator of the coverage rate of treatment. It’s quite hard for
us.” In a training workshop conducted by the Shenzhen CDC, a leader reminded
CDC staff that the capacity of DH Hospital to provide medical treatment to PLWH
was reaching saturation, and they were required to be more cautious in endorsing
free ART to PLWH. In the interview with a physician in DH Hospital, it was reported
that more than 400 PLWH were receiving free ART in DH Hospital.
The Shenzhen CDC, as a local CDC, did not have specific funding to support NGOs
or grassroots organizations to work on HIV and MSM issues. A fixed sum for a fixed
purpose was provided as the reason by Shenzhen CDC staff. In other words, they did not
receive specific funding for supporting MSM communities or PLWH groups from their
higher level CDC or related authorities.
A senior activist on MSM and HIV issues said, “The government does not provide
enough financial and policy support, and there is a lack of follow-up services…lack
of capacity building, and finance is far from enough…PLWH need real aid and
support”; and he further said, “we are looking for resources and collaborations to
push changes in the community.”
A peer worker in a grassroots HIV positive group reported that his group did not
receive any financial support from the CDC or government. They only received
limited funding from an NGO that worked on PLWH issues, which just covered the
salary (RMB1,500 per month) for a full-time peer worker and the rent and utilities
of the office.
Service time for CD4 count and virus load test has been shortened in the Shenzhen
CDC. And other health care institutes also experienced capacity obstacles.
A senior HIV positive MSM peer worker mentioned that “previously from Monday
312
to Friday, the CDC provided CD4 count tests, but now it’s just on Tuesday and
Thursday….Moreover, the machine for testing virus load in the Shenzhen CDC is
always broken down.” Some respondents also had these problems, since it is not
convenient for them to ask for leave to undergo the test.
CD Hospital faced a capacity limitation in providing in-patient health care.
DH Hospital had a capacity limitation in providing medical services for
non-infectious diseases, such as anal disease surgery. The office hours in DH
Hospital was only in the morning of Monday, Wednesday, Friday and Saturday.
Health care providers lack systematic training. They also lack training in MSM
subculture competency, rapport building and communication with PLWH.
During my fieldwork, I took part in CDC conferences and training. Staff were
trained quickly in some conferences and it was not professional in MSM subculture
competency and lacked role play training in psychological counselling.
A CDC staff member in B district said, “A trainee in our office worked on follow up
with patients (PLWH), gradually two of them cried together. …Sometimes the CDC
downtown provides training, I remembered there was VCT training one year,
teaching you how to talk to patients, that’s pre-test and post-test counselling. But
there’s no specific training about follow up.”
Kong said, “After I received a positive result, I was crying and tearing. A member of
staff said to me ‘what good will regret do now! When we conducted advertising and
told you guys to use condoms, you guys didn’t pay attention to it at all. What good
will regret bring you?’ I felt that this doctor was not as good as he needed to be.
The result is the result anyway, and it is useless to complain.”
Losing confidence and resultant confusion among health care workers
“The spending was very high”, while the health outcome (reduction in HIV infection
rate) was not obvious. And more and more MSM were getting infected. CDC staff got
confused and lost confidence in fighting against HIV/AIDS.
In the focus group discussion, a senior CDC staff member said, “Now we have put
313
condoms in the dark rooms. I believe it (the existence of MSM) has been
recognized. You see! How many materials do we use? The CDC, CD Hospital and
NGOs from Hong Kong all distribute condoms. It’s estimated that only in the Y
Sauna (a big tongzhi sauna in Shenzhen) 60 to 70,000 condoms were distributed
last year. That’s just a small part. You see! The spending is very big, isn’t it! But it’s
useless, and PLWH are still continuously increasing.” Another staff member
echoed his view that “I feel it is not the way, it has no effect.”
CDC staff work hard in VCT and try to change MSM’s risky behaviour of using no
condoms but no good outcomes have resulted. They therefore wonder about the effect of
VCT and feel frustration, and their passion for working is also decreasing.
In the focus group discussion, Staff Z said, “I feel the (VCT) effect on nantong
(MSM) is also not good. It’s really not good. In 2005 when I just came here, I was
excited about it. I worked on a nantong. I chatted with him for a long time, and I felt
I did a good job in this case. This man was also very satisfied when he left. A half
year later, he came back and had a test. It was negative again, and we had a good
talk as well. He got to know much knowledge and felt no problem. However,
another half year later when he had the test again, he was positive. I felt so
frustrated.” Staff C said, “Yes, after chatting for about a half day, he knew about
everything, but still practiced no condom use.” Staff B said, “They know about
everything, and some even feel why bother to tell me such stupid things.” Staff Z
continued, “He understood everything, all of the reasons (of condoms). He said ‘I
definitely will use condoms, I use condoms every time. Doctor, you told me in our
first meeting and I knew you were kind to me. I definitely use (condoms). It’s good
for me and I also consider my family.’ He made a long speech and looked like he
was promising to me…I felt all of my work had been done for nothing.” Staff F also
shared similar experiences that “before the Spring Festival, I talked to a nantong, a
college student, for about half an hour in T Sauna, we talked about a lot of things. I
really chatted with him. Later, he told me ‘I am sorry to tell you I got infected’. You
see, this kind of staff! Later I lost my patience to talk to them in detail.” Staff Z
echoed his view, “I feel it really doesn’t work.” Staff C said, “Sometimes I feel very
frustrated.”
The more frustrating thing for them is that even volunteers in peer health education
314
also get infected. They see more and more people becoming infected.
Staff Z said, “Our volunteers also got infected. I called someone to ask him to
come back and have a diagnostic test again. A volunteer came to me and I asked
why he was here. He said I phoned him to come. I was surprised. I did make a call
but I didn’t call him. I asked the name he wrote on our form. Oh, yes, it was him. I
thought it was impossible. He went to do health education for others, but he
himself got infected. After being tested, he really was infected.”
Staff C said, “Among volunteers, I discussed things with them and they also felt
very frustrated. They ran to every MSM venue (to conduct health education) for
the whole year, and worked a lot. It’s a regret to see that infected people were still
increasing. They also felt very frustrated.”
A leader in a grassroots MSM organization felt sad that “each time in collective
gatherings (in an HIV positive group), I see new faces (more infected people)”.
CDC staff even feel lost in this HIV/AIDS campaign and do not know what to do
next.
The following is a small part of the focus group discussion (A is me, and others are
all CDC staff):
A: Since you guys have been working on HIV positive nantong (MSM) issues for a
long time, may I ask what strategy is the next step?
X：Quite helpless.
C：Strategy?
D：Ah, about nantong…
A：Do you have any strategy?
C：Basically, there’s no new strategy, just the same drill.
Psychological distress and suffering among health care providers
Health care providers, such as CDC staff, experience some emotions as well, such
as “fan” (烦 be annoyed and troubled/superfluous and confusing). Some staff experience
some symptoms of psychological distress.
315
Staff Z said she became very emotional and quarrelled with her family.
Staff J said she quarrelled with her boyfriend after work.
Staff T and Staff L reported having nightmares about being HIV positive.
CDC staff sometimes react emotionally to PLWH. And they need psychological
support as well.
Staff Z was a case. And some respondents reported her attitude was not good. But
Staff Z self-reported that she experienced psychological difficulties and needed to
consult a psychologist, and she also reported being complained about and
threatened (verbally or physically) by PLWH.
Staff Z met some emotional people, “In this active and ambitious large-scale
testing among MSM…some of those diagnosed HIV positive could not accept the
result and got angry with us, and scolded ’why did you test me as HIV positive? I
will lose everything’.”
Staff Q said, “Because the things I managed were not healthy, I was affected
psychologically at that time, and I wanted to give up this job. I could not bear it and
suffered from major psychological stress. I then felt I really needed psychological
counselling.”
Courtesy stigma is another distress health care providers suffer, such as being
avoided by colleagues or required to moved office.
Staff Z reported being avoided by some colleagues when she had lunch in the
canteen in their working unit.
A CDC staff member in L district reported some colleagues refusing to take a seat
in her office, since some PLWH had sat on this seat.
Staff Q said, “Our office is located on the third floor, and all patients need to go to
the third floor. Our working unit wants to move our office to the first floor since they
don’t want patients to go across their working area.”
Internal struggling is also a distress that health care providers suffer. Some
316
physicians cannot understand why they need to provide MSM free ART, and why treat
them better than other patients who are suffering from cancers or leukemia. They
experienced conflict between the confidentiality of patients and protecting patients’ sex
partners.
In the focus group discussion, CDC staff also described their struggling that “some
young men consult me and tell me who they have had sex with. When I heard the
name, I realized this guy was HIV positive, but I could not say so since I could not
disclose another’s information. I could only say ‘you must use condoms’.” And they
were also confused that “after we diagnosed someone HIV positive, we didn’t
practise any constraining force on them; instead we still needed to keep them
secret.”
Another senior staff member also expressed his helplessness that he realized
someone – “seeder” – was HIV positive, but still actively had unprotected sex with
others, but he could not do anything to stop him, and just felt sad.
Absence of specific or tailored MSM health care
MSM are generally regarded as a high-risk group and HIV positive MSM are
regarded as no different from other PLWH. MSM specific health care is absent. CDC staff
are not sensitive in tailored MSM health care.
Staff Y said, “We got numb. This kind of (HIV positive MSM), in our eyes, are all
infectors, and they are not different from others (PLWH). For nantong (男同 MSM),
generally speaking, they are definitely a high-risk population.”
A member of staff in a Fang Bao Suo, the most grassroots CDC branch, said,
“Actually the whole nation needs this (HIV knowledge and information). Why not
open a channel to conduct advertising…to enlarge the coverage of advertising, to
strengthen the measures of advertising, round the clock, advertisement
bombardment day and night. Why bother to separate different populations
artificially? They are the same.”
Staff Q said, “The Global Fund project is conducted in Shenzhen starting from this
317
year, and we need to conduct outreach three or four days per week among
nantong (MSM) and female sex workers, distributing condoms and IEC materials
introducing general knowledge of disease prevention…First of all we promote
condom use, and second promote regular testing.”
During my fieldwork, no CDC staff mentioned any MSM specific health services,
such as anal health, oral health, men’s health (erectile dysfunction, prostatitis) and
relationship therapy. What they did talk about was mostly the HIV test, CD4 count
test, virus load, ART, side-effects, physical checks, STDs, complications and follow
up. Some services were project-based, not routine services.
Even though CDC staff realize that many HIV positive MSM experience
psychological distress or mental health problems, psychological and mental health care is
mostly absent or just regarded as a part of counselling in VCT. Even in VCT, CDC staff
acknowledge that pre-test and post-test counselling are not done well in their work. In their
discussion, it showed that CDC staff pay less attention to this part of mental health care.
Staff T said: “For pre-test counselling, many people were on the spot, and we just
took blood and tested directly, with no this part (pre-test counselling).”
Staff Z said: “For post-test counselling, it’s difficult to do it. Some people go numb
after learning their positive result, some want to jump to their death, and some just
want to be alone somewhere. There are many different types and it’s really very
difficult to manage their behaviour well.”
Staff C said: “Psychological counselling for HIV positive people is never enough
and it’s no way to do it.”
Staff Y said: “Nationally speaking, the attention to psychological counselling is not
enough. Who should take on this role has not been clarified yet. We have been
getting out of hand and feel great stress sometimes.”
The following comments indicate that specific mental health care and relationship
therapy should not be absent.
The leader of the SRW said, “HIV positive MSM suffer from two social statuses,
one as being an MSM, and another one as being HIV positive…They need care,
318
understanding and aid…their boyfriends or sex partners may break off relations
with them or estrange them gradually.”
7.4 Positive factors associated with health service seeking
7.4.1 Individual factors
Sense of importance and achievement
Many CDC staff working on HIV issues perceived their jobs as important. Some
thought they might make some achievement. Some felt happy, when their efforts had been
recognized and they were understood in their work. Some felt passionate about upgrading
their working skills. Some felt satisfied and confident.
Staff C said, “These years, the country pays much attention to this work (HIV
prevention), and we have conducted many specific investigations.”
Staff Q said, “AIDS is quite important in our whole CDC system. In our unit, the
department of infectious disease control and prevention is very important. And
then HIV/AIDS becomes more and more important at the national level and our
unit pays more and more attention to HIV/AIDS.” And she further described, “I am
happy all the time,
since my effort
has
been recognized by them
(patients/clients)…big stress…but I feel this work brings me a stronger sense of
achievement.”
Staff G said, “Since last year, a China CARES Programme has been set up in our
district. Our leaders pay much attention to this, and our office has become
independent of the infectious diseases department.” And he presented his internal
requirement that “I am not satisfied with myself, because I have just taken over
this job and I still lack skills.”
Staff S said, “We now have performance appraisals. The country (China CDC)
now watches very closely and our leaders pay great attention to this.”
Staff L said, “The importance of HIV work in our working unit should be the upper
middle level…I feel quite satisfied with my work. Because I am quite conscientious,
319
I believe I can do a good job.”
Staff H in B district said, “This disease was given a lack of attention previously. But
it attracts more and more social attention now. I feel a strong developmental
potential in this work.”
Staff Z said, “He (an HIV positive MSM) said to me that ‘Doctor, it’s really not easy
in your position. I really understand you.’ I felt I was really so moved at that
moment.”
Perceived real benefit or effectiveness
When respondents perceived real benefit or effectiveness of health services, their
compliance with these services, such as ART and related physical checks, was quite good,
or they actively looked for these services, such as alternative TCM.
Zhu said, “From my childhood right on up, I never insisted on doing one thing.” But
after he took free ART and his virus load tested lower than 500, he became
confident about his future again. And he exercised very good compliance with ART
and the related physical checks. Several respondents who took ART also regularly
went back to DH Hospital to have body checks and complied with ART well, such
as Zhao, Shen, Yang and Zhou.
Kong said, “I heard that there is a kind of TCM, named ‘ai di kang’. After taking it,
virus load can be reduced to a very low level and increases the CD4 count…It’s
not necessary to comply with taking this medicine. For free ART, you need to use it
for life once you start. …There was a patient … after he took ai di kang, his CD4
count was improved and no side-effects were experienced; after he stopped taking
it, his CD4 count did not decrease dramatically…I will definitely choose to use this
TCM.”
Perceived bad health status
Those respondents who had a lower CD4 count, or presented symptoms of
diseases (e.g. STDs) were more eager and active to look for health care, such as Zhao,
320
Zheng, Feng, Zhu, Shen, Yang, Qin. Hei, Shi, Zhang and Jin.
7.4.2 Interpersonal factors
Sound attitudes facilitate positive interactions
Health care providers’ good attitudes may initiate a positive interaction between
health care providers and HIV positive MSM, which makes HIV positive MSM feel
comfortable to seek health services. In turn, health care providers can obtain good
reputations among PLWH and MSM.
Staff N, who was a leader at the middle level, actually did not directly serve PLWH
and MSM, because her attitude to PLWH was very good, and her reputation
among PLWH was quite good.
Shi said, “I had less contact with the CDC, but N was quite good…I chatted with
her, and I told her everything about me…She would like to help if she can.”
DH Hospital and CD Hospital had good reputations among HIV positive MSM. One
of the major reasons was that their attitudes were very good to HIV positive MSM.
During my fieldwork, I saw that PLWH and some of my respondents felt
comfortable about visiting the Love Clinic (AIDS clinic) in DH Hospital, and they
gathered together and chatted friendly with staff there.
The importance of peers and close friends
By being accompanied or connected with peers or close friends, respondents had
closer links with health services. They went together with friends and peers to visit
grassroots organizations, NGOs, the CDC, DH Hospital, CD Hospital or other hospitals.
They also shared health care information and helped each other to utilize health services.
321
After Zhao was diagnosed HIV positive, his sex partner comforted him and
encouraged him that “no problem, it will become better gradually”. Zhao said, “he
told me to maintain a good mood, relax, and don’t always dwell on this thing. This
problem would be solved one day, and our country provided free medicines.” Zhao
then actively cooperated with physicians to take ART.
Jin shared information of anal disease treatment in a small hospital with HIV
positive peers, so that they could obtain treatment as well. He said, “Several
friends in the circle also had anal fistulas. One of them knew that I received
treatment in P Hospital; he also went there for treatment. I told him how to save
money in this hospital.” He also shared this information with a peer worker in an
HIV positive group.
Hei had a friend who was also HIV positive, and Hei asked him for help to settle in
Shenzhen and look for free ART. Hei said, “I asked Feng, and he said he can help
me to get a residence permit so that I can have free medicine.” Feng later also
accompanied Hei to the Shenzhen CDC to go through the process, and distributed
free condoms to Hei, and invited him to join collective activities, such as hiking,
and then Hei got to know other peers.
Sun also tried to help his fellow townsmen to get access to free ART in Shenzhen.
When I met Sun again during my fieldwork, he asked me about this issue.
Wang expressed his feeling that “it’s really close to the heart of the group (an HIV
positive group)…He (a peer worker) reminded us to take medicines, and to have
the CD4 count test. If you felt alone, you can make an appointment with other
peers, and he would facilitate you in the group.”
Qian went to have an HIV test accompanied by his friends and he described,
“because of my friends, both of them are together (boyfriends), one of them said
‘we should ask Qian to go together to have the test… his previous boyfriend was
very promiscuous.’ I thought I hadn’t had the test for many years and should have
one.”
Family care
As migrant workers, most respondents did not live with their families. For some
respondents, they obtained care and support from their families, and they then had more
access to health information and services.
322
Xu obtained care and support from his elder sister and this encouraged him to go
back to his hometown. He said, “My elder sister always telephoned me…last night
when I talked to my elder sister by phone, I cried. I don’t know how come I always
have dreams and dream to go home…previously my elder sister asked about
related medicines for me and she hoped it would be helpful to me.”
Shi obtained strong care and support from his wife. He said, “I got married, and my
wife didn’t get infected. I told her this thing very clearly. …you know, I wanted her
to leave me. … But she didn’t agree and still wanted to be with me…Instead, every
day she cooked soup for me and treated me quite well. She also improved our
living standards, and we have soup, fish, chicken or pork in each meal. My life is
quite good.” Shi presented good compliance with ART and regularly visited DH
Hospital for physical checks.
Qi went back home with his wife and children and experienced family love. He said,
“I told her there were some problems in my body, and she didn’t ask in detail. …I
can look after myself quite well at home. My stress is not as high as before, and I
have a feeling of safety and have a good mentality. My immunity and strength is
comparatively improved. ’ After going back home, Qi actively contacted his local
CDC and cooperated well in follow up.
Zheng’s parents cared about him so much, taking care of him in every aspect of
life, and supported him with his treatment of STDs.
Partners, boyfriends and love relationships
Some respondents were still accepted or cared for by their boyfriend or partners
after the diagnosis. These respondents presented positive life attitudes, such as mutual
care, love and responsibility, and they were also active in health care seeking.
Tao said, “He treated me better than before. Every time when I visited him, he
cooked soup for me and always asked whether I had enough money. Each time
when he visited me, he bought me a lot of things. And he rang me two or three
times per day to ask about my health, much better than before…I felt really moved
that after I got this disease he didn’t give up on me. …. Until now, several months
have passed, and he hasn’t said anything (about breaking up); instead he has
treated me better and better. Anyway, he and I have been together for seven years,
quite a long time.” Tao regularly went back to the CDC to have the CD4 test.
323
After Jiang was diagnosed HIV positive, his partner did not leave him; instead they
built up a formal boyfriend relationship and lived together. Jiang described his life,
“I feel my life is much richer than before. Hehe (smiles slightly), not so
humdrum. …Everything is going well. I feel satisfied. The crucial point is he is
quite good, and it’s hard to meet a person like him. …When you stay together for a
long time, you will change from lovers into a family. And then it’s not just an issue
of affection, instead it’s an issue of ‘qin qing’ (亲情 family love)”. During my
fieldwork, I saw that Jiang and his boyfriend would mutually remind each other to
have tests; Jiang had a CD4 count test, while his boyfriend underwent the HIV test.
Once his boyfriend received a result of “uncertain”, and they got very nervous. And
then Jiang paid more attention to oral health and oral contact, and used mouth
wash. When Jiang worked very hard and stayed overnight, his boyfriend would get
angry and require him to sleep. They also went to join collective activities in a
grassroots organization together with other tongzhi/MSM, such as outreach
volunteer work and outdoor activities.
Sun and Li were typical cases. They were a couple and lived together. Sun was
first diagnosed HIV positive, and he felt that he transmitted HIV to his boyfriend.
But Li did not want to say so, and he said “because both of us had boyfriends
before, and we later got to know about getting infected, but were not clear about
what time.” Li said, “He (Sun) had the HIV test earlier than me. After he tested HIV
positive, he immediately thought about me and therefore he brought me to have
the test. I felt he really cared about me. We were in a very good relationship. And
then I tested positive.” Sun presented care about Li, and he said, “My boyfriend is
not clear about that (HIV), and he doesn’t understand.” But Sun got to know many
HIV positive peers and got to know a lot of related health information, and he
provided guidance to Li daily. One time, a CDC staff member called Sun and
reminded him that he and his boyfriend had not had a CD4 test for quite a long
time, and Sun therefore brought Li to the CDC to undergo the CD4 test. Sun did
care about Li, and the following dialogue provides a clear message of that (A is me
and B is Sun):
A: What is most important to you now?
B: It’s my friend.
A: Do you mean the support from your friends?
B: I mean my current BF (boyfriend).
A: Oh, you mean Li. What kind of relationship are you two in?
B: “qin qing” (family love).
324
A: Could you please describe what the feeling of “qin qing” is?
B: It’s just like your left and right hands, and none of them can be dispensed with. I
feel this way. I feel I cannot bear to lose him, and this hit will be bigger than any
other loss.
In my interview with Li, I saw that he really had very limited knowledge and
information about HIV/AIDS, and he was also very optimistic. When I visited their
home, Sun cooked, cleaned and washed, and it seemed that he managed
everything, and a boyfriend made him become more responsible. Sun also
continued taking part in volunteer activities.
Meng presented similar experiences as Sun. He had a boyfriend who was also
HIV positive. Meng was older than his boyfriend and took care of many things,
including helping his boyfriend to move to Shenzhen and look for free health care.
Feng had a boyfriend who was also HIV positive. His boyfriend obtained a degree
in medicine and controlled HIV very well and his virus load count was lower than
500. His boyfriend shared with him a TCM prescription, which he used to good
effect in maintaining his CD4 count.
7.4.3 Community-based factors
Mutual benefits from joining volunteer work
For those respondents who took part in volunteer work consistently, they all
experienced multiple benefits. They had more opportunities to communicate with more
peers, activists and professionals, and therefore they got to know more knowledge and
experiences of how to manage their own health. In the process of helping others, HIV
positive MSM obtained self-help as well, which significantly enhanced their self-confidence
and self-esteem.
Zhang said, “We went to visit patients and talked to them. These three months
were really informative, and I got to know about symptoms, psychological issues
325
and how to communicate with patients. …I tried to help as many patients as I
could. …people from all over the country chatted with me…some regarded me as
a doctor, hehe (laughs slightly), actually I am just a patient and got to know a bit
more (of HIV/AIDS).” During my fieldwork, Zhang was one of the best collaborative
respondents and allowed me to join his daily life. I saw that he managed his life
quite well.
‘YGL’ (a volunteer association) organized training for PLWH, introducing nutrition,
ART and the related health management. Hua, a member of the volunteer
association, said, “after several months of volunteer work, I saw many
advertisements, and had a much more balanced mind. …The most important thing
was that the volunteer work gave me a big help…spiritually it gave me a big help,
otherwise I really could not survive…Many times I gradually enlightened myself to
be kind to myself and have a good day every day.” Hua further expressed his
experiences in volunteer work, “I just wanted to be happier. If I can help others I
would like to help. When I spent more time on volunteer work, gradually I felt it was
very helpful for me. At least I learned to be strong from others and made myself
become much stronger…When together with volunteer friends, we chatted and
made jokes and learned a lot of knowledge.” Hua made good use of my interviews
and he used them as opportunities for psychological counselling and talked to me
in great depth.
When I asked whether volunteer activities can help him to recover from the
diagnosis, Jiang said, “Sure, it works. Because of my assistance, someone was
secured from a situation of immediately getting infected. It’s really a very good
deed...If you do a good deed in a spiritual way and contribute a lot to society, even
when you leave this world one day, your contribution still exists. That’s why I want
to be a volunteer. Since I have been HIV positive, I would like to use my own
experiences, a kind of zero distance experience, to inform others who are at risk to
protect themselves.” Jiang was another best collaborative respondent of mine and
I lived in his apartment for several months. I witnessed him recover from the
diagnosis and go back to normal life, and I saw he experienced a certain degree of
growth as well.
Developing the MSM community and promoting acceptance of HIV positive peers
Internal collaborations in the MSM community have been developed significantly. It
326
is normal for grassroots organizations or NGOs to collaborate with several MSM business
venues, such as tongzhi bars and tongzhi websites, to organize parties or outdoor
activities. A kind of collective identity of tongzhi/Nantong/MSM is forming.
In the 2010 World AIDS Day Party, a rainbow flag, which is a strong symbol of
gay/tongzhi identity, was hung on the spot. This party was co-organized by the
Shenzhen CDC, SRW and ZY bar. Each year the SZ CDC and SRW choose a
different tongzhi bar to hold this party.
The “Dating with Rainbow” activities were co-organized by the SRW, Blue Ribbon
Tour Website and several tongzhi bars. These activities aimed to facilitate looking
for partners among tontzhi/MSM communities.
Some organizations are becoming stronger and can negotiate with authorities in
some sense.
The SRW leader sits on the HIV/AIDS advisory committee of the Guangdong
Global Fund Project. In an internal meeting, the SRW leader asked its volunteers
in LG district to present them as members of the SRW and told the LG CDC to talk
to the SRW first before they asked volunteers to do volunteer work. And therefore
the authorities need to pay more attention to grassroots voices before they make
policy or conduct activities.
NGOs and grassroots organizations are becoming diverse. Some work on general
MSM issues, some work on PLWH issues and some work on MB issues.
Extraneous NGOs, such as the CH Foundation, bring fresh ideas, and Hong
Kong-Shenzhen collaborated NGOs, such as XY, focus on MB issues, and they
also inject funding. Local grassroots organizations, such as the SRW and HPG,
play a major role in taking care of HIV positive MSM. Among HIV positive MSM,
different types of qq groups are also organized and provide more social spaces for
gatherings and mutual care.
327
Grassroots MSM organizations generally have good relationships with commercial
MSM venues, such as gay bars, saunas and clubs, and they have good cooperation.
Commercial MSM venues generally work together with the Shenzhen CDC and
SRW to carry out health education on the spot. Volunteers from the SRW reached
most of the tongzhi bars and saunas to conduct education and advertising.
HIV positive MSM are more acceptable in MSM communities. They are recruited
to be volunteers, and they were accepted by tongzhi friends making the
show---Dating with Rainbow, and they are accepted in outdoor activities as well.
7.4.4 Factors in the health care institutes—free services
The CDC provides free VCT, CD4 count test, virus load test and regular follow up
for HIV positive MSM who do not take ART yet. The SRW works closely with the CDC to
provide free condoms and lubricant to MSM venues and individuals, provides free hotline
counselling, and arranges recreational activities and collective gatherings or outings which
are free of service fee.
DH Hospital provides free ART, regular physical checks and regular follow up with
PLWH taking ART or AIDS patients. The HPG works closely with DH Hospital and provides
free services, such as helping to takeART medicines when patients cannot reach DH
Hospital in office hours, helping with the purchase of social insurance, free psychological
support and counselling, free arrangement of social gatherings or collective activities, etc.
Some physicians even provide personal help to PLWH. For example, some respondents
asked physicians in DH Hospital how they can have children safely. Some physicians did
help a few PLWH to have children much more safely and a very good rapport was
therefore built up.
328
CD Hospital provides free HIV and syphilis tests, and syphilis and condyloma
acuminatum (CA) treatments to MB population. CD Hospital XY cooperates by providing
medical, social and psychological support for MB/MSM patients.
Other general hospitals have responsibilities to report to the CDC and refer HIV
vectors or AIDS patients to the CDC once they find out someone is HIV positive. This is a
fixed collaboration between hospitals and the CDC.
7.5 Summary of health service seeking in a modified socio-ecological model
A list of problems in health service seeking has been identified from the perspective
of HIV positive MSM, such as not getting free health services, being refused health
services, and reluctance to seek services and support. An adaptation process has been
presented. HIV positive MSM have changed from avoiding contact with the CDC to actively
seeking free ART. At the beginning of diagnosis, they need immediate social and
psychological support; and then, respondents can become clearer about their needs of
professional health care. Their unmet needs include needs for health guidance, improved
services, good quality medicines and better distribution, social support, social welfare, and
psychological and mental health services.
In terms of social ecology, lists of factors play a negative role. In the health care
institutes, negative factors include tendencies of controlling the MSM population,
overloaded work, distress, confusion, lack of confidence and frustration among health care
providers, underdeveloped collaborations between health care institutes and MSM
communities,
absence
of
MSM-specific
health
services, practical problems
of
HIV/AIDS-related policies and regulations, barriers to social or commercial health
329
insurance and heavy financial burdens in health services. In the MSM community, different
CBOs do not collaborate well; some even have a tense relationship with the Shenzhen
CDC; some seriously lack technical and financial support. There is no specific funding to
support social development of MSM communities, and some migrant MSM are of low
economic status.
Even though factors framed under the social ecology model present strong barriers
to health service seeking, some factors play a positive role. Free health service is a strong
factor that contributes significantly to HIV/AIDS prevention and intervention. The
collaboration between commercial MSM venues and grassroots MSM organizations is
going well. HIV positive MSM are recruited for volunteer work and achieve a reciprocal
result of self-help and helping others. Family care worked for some respondents.
In terms of cognition and emotion, some factors exercise negative influence. Many
HIV positive MSM do not have a concept of health services. Many health care providers do
not think that they provide services to PLWH, since it is just regarded as a job and they do
not have personal relationships with MSM. Barriers to health service seeking also include
low awareness of some health problems, fear of serostatus disclosure, poor mental health
status, perceived comparative good health status, perceived low benefit or effectiveness of
health services, and negative attitudes (e.g. distrust).
However, some factors present positive effects. When health care providers have a
sense of importance and achievement in their work, they are more passionate in their work
and present better attitudes to their clients or patients. When HIV positive MSM perceive a
real benefit or effectiveness of health services, they are more active in looking for these
services. It is a kind of virtuous circle that positive attitudes generate positive interactions
330
between health care providers and HIV positive MSM.
In terms of action (purposive activity), maintaining close interactions with peers and
friends has a very positive effect on health service seeking, such as going to health care
institutes accompanied by friends, and obtaining health service information from peers.
Moreover, having partners or boyfriends made respondents present positive life attitudes,
such as mutual care, love and responsibility, and they were also active in seeking health
services.
7.6 Discussion
7.6.1 Problems in health care institutes
7.6.1.1 The top-down approach – controlling instead of community building
Based on the data presented above, it can be seen that the hierarchical philosophy
and operation in the health care system is an important factor that is prohibiting an
effective response to the HIV epidemic. This is in line with an argument that China’s health
care system has gradually shifted away from a bureaucratically controlled, collectivist care
system, but it remains organized in a highly hierarchical manner (Davis & Chapman, 2002).
The top-down working style when providing HIV-related services is still dominant in the
CDC system, and it is presented in the following aspects: a tendency of controlling,
asymmetric power relationship, lack of collaboration and disproportionate funding
distribution.
331
A tendency of controlling
A tendency presented in the practices of the CDC system is “controlling the MSM
population”, instead of “developing this marginalized MSM communities” to share
responsibilities
in HIV/AIDS
campaigns.
The top-down
approach
in
HIV/AIDS
management conducted by the CDC addresses a specific set of objectives, such as
providing VCT and universal free ART. However, the disadvantage of this approach was
also explicitly presented in that the CDC has lost the ability to implement or benefit from
the knowledge and experience of HIV positive MSM at the lower levels. It therefore has
failed to develop culturally sensitive and practically effective measures to carry out
HIV/AIDS preventions and interventions. It relies too much on biomedical technologies and
authority force. It provides free ART and related free medical tests to eligible PLWH with
good cooperation in real name registration and follow up. However, these forces create
resistance sometimes and ruin the relationships between the CDC and some PLWH and
HIV positive group. If the MSM community’s establishment is still hard to achieve in
contemporary China, partnership building between HIV/AIDS-related authorities (e.g. CDC)
and MSM NGOs or grassroots organizations in HIV/AIDS prevention and intervention
should be highlighted, since it is the most basic infrastructure for a successful HIV/AIDS
campaign.
Asymmetric power relationship
The top-down approach causes asymmetric power relations between the CDC and
MSM communities. The CDC does not regard its interaction with MSM communities as a
kind of partnership establishment, and it therefore pays less attention to capacity building
in these communities, even though it realizes that grassroots organizations and NGOs are
332
underdeveloped and unbalanced in their capacities, needing technical and financial
support. Community participation is very limited. The practice of real name registration in
diagnostic tests is an example. The CDC does not consult the MSM community and its
organizations before carrying out programmes or policies, and therefore does not modify
its plans or procedures based on feedback or suggestions from MSM communities. That is
a very important reason why some problems arose when the real name registration in
relation to HIV diagnosis was carried out, and why it has been so difficult for it to reach its
goal when the “Four Free and One Care” policy was implemented. When implementing
policies or regulations, the CDC does not immediately provide intensive training or
guidance to grassroots CDC staff or related workers, such as on confidentiality. It points
out the importance of providing systematic and continuous training in related issues
among health care providers.
Lack of coordination and collaboration
The coordination within the health care system and the collaboration between
health care institutes and the MSM community were at a preliminary stage at the time of
this research, since health care institutes do not emphasize the importance of partnership
establishment, and instead they just try to control the MSM population through more
surveillance and regulation practices. Resistance is then generated within the MSM
community, and it is difficult for MSM communities to perceive ownership or indeed have
engagement in these projects organized by the CDC or other health care institutes. Even
among health care institutes, such as the CDC and different types of hospitals, networked
partnerships are not well-established. DH Hospital, the only designated hospital for AIDS
treatment in Shenzhen, is a specific hospital designated for infectious diseases, and has
very limited medical capacity for managing other non-infectious diseases; and CD Hospital
333
is a specific hospital for chronic diseases and sexual diseases. Other larger metropolitan
hospitals that have robust medical capacity for dealing with other diseases generally
refuse medical treatment to PLWH, since they do not regard themselves as having this
responsibility. The coordination and collaboration among these hospitals are very limited,
and no effort has been made to address this issue yet. For example, it is very difficult for
the CDC to negotiate with high level hospitals to provide medical surgery to PLWH. This
has proved to be an obstacle for effective integration in prevention, treatment and care.
AIDS is a special infectious disease since it can be complicated by many other diseases,
and this situation requires close coordination and collaboration between health care
institutes, especially hospitals.
Disproportionate funding distribution
Even though huge funding has been spent on HIV/AIDS issues in China, very
limited funding is directly provided to grassroots organizations and NGOs from the national
level, and no specific funding is from local CDCs. In the US, Fenway Community Health is
a community-based health care organization in Boston. It started as a free clinic,
supported partially through donations by clients and partially through subsidies from the
city of Boston, and now it has become a sophisticated multidisciplinary centre that is
supported through a variety of sources, such as federal grants and funding from the State
of Massachusetts (Mayer, Mimiaga, VanDerwarker, Goldhammer & Bradford, 2007). In
Australia, NGOs are increasingly important partners in the overall national investment in
health promotion (e.g. sexual health) and government funding is the most important
financial source (Wise & Signal, 2000). In the US, a sliding fee scale is used to determine
eligibility for patient discounts, and patients cannot be turned away due to inability to pay;
and enabling services, such as care coordination and transportation, are provided as
334
appropriate to increase access to care and improve patient outcomes (Rausch,
Dieffenbach, Cheever & Fenton, 2011). In this regard, financial support from local and/or
central governments is crucial and necessary for grassroots organizations to develop from
an initiative stage into a sophisticated model, and other forms of financial assistance for
PLWH in need are also productive.
7.6.1.2 Problems among health care providers
Underdeveloped care protocols and lack of high quality training and technical
backup
Overseas studies contend that health care workers face significant occupational
challenges, including work-related infection risks, increasing demand for services,
inefficiencies in the HIV care financing system and a lack of appropriate training for
HIV/AIDS (Marchal, De Brouwere & Kegels, 2005; Unger, Welz & Haran, 2002). For
example, Fenway Community Health (FCH) established standards for improving cultural
competence about LGBT health issues for other health providers and has developed
programmes to educate health professionals about specific LGBT health concerns. The
training covers demographic and social environmental issues of LGBT populations, sexual
history and sexual risk reduction counselling, LGBT health disparities and disease
prevention and health promotion, LGBT youth, elderly and families, etc. (Makadon, Mayer,
Potter & Goldhammer, 2008). FCH has developed an active professional educational
programme, and participants include medical students, residents, social workers and other
mental health interns, nurses, and allied health professionals (Mayer, Mimiaga,
VanDerwarker, Goldhammer & Bradford, 2007). The composition of staff in FCH is diverse,
including gay, lesbian, bisexual, transgender, as well as straight health care workers,
335
which ensures a great involvement of HIV influenced populations.
In Shenzhen, health care providers encounter such problems as overloaded work,
lack of professional training in psychological counselling and self-releasing, lack of
confidence and knowledge about best practices in HIV prevention, and psychological
distress and suffering. These problems suggest that there is a lack of training and tailored
technical assistance for health care providers, especially culturally MSM specific and
systematic training, and health care providers need professional and psychological backup
and support as well. When health care providers feel importance and a sense of
meaningfulness in their work in HIV/AIDS prevention and intervention, they will be more
committed and professional towards their works. Positive outcomes-based results ensure
that they will have a feeling of achievement which in turn reinforces their professional
commitment in HIV-related work.
Lack of integration of prevention, treatment and care
Even though China has carried out a new policy of offering free treatment for rural
and poor urban residents, free and voluntary HIV screening tests and free education for
orphans of people living with HIV/AIDS since 2003 (Zhang et al., 2007), the CDC has not
adhered to the concept of health system strengthening in the integration of prevention,
treatment and care. It has paid much less attention to “care”. The data from the CDC staff
does not reflect an awareness that psychological and mental health was crucial to
prevention and treatment projects in HIV positive MSM. Mental and emotional health
services that improve men’s resilience to stressful life events may have beneficial impacts
on improving their sexual health; and more gay or bisexuals tend to utilize services of
health professionals who provide mental or emotional support (Calzavara et al., 2011; ).
336
Moreover, CDC staff have no idea of specific MSM health care. By targeting specific MSM
health care needs, such as anal health, oral health, men’s health (e.g. erectile dysfunction,
prostatitis) and relationship therapy, they will create much better rapport with this
population and increase the efficiency of their HIV prevention and treatment projects.
An argument is that increased integration of general practitioners (GP) and other
community-based services in the overall system of care would secure better continuity of
care and hence better quality of care (Huby, Porter & Bury, 1998). Moreover, common
preferences shared by PLWH include doctors who are knowledgeable about HIV or, failing
that, willing to learn; doctors who put time and effort into keeping up to date with the latest
developments in treatment; and those who are caring and take time to talk with their
patients in a way that recognizes them as a “whole person” rather than just the
embodiment of a disease (McCoy, 2005). Therefore, the medical visit is an encounter that
facilitates or restricts the daily health care activities that individuals can do around their
health. From this perspective, “access to health care” does not stop with the entitlement to
consult a doctor; it also takes place in the medical encounters (McCoy, 2005).
In Hong Kong, there are three local HIV clinics providing ART for PLWH. After being
confirmed HIV positive, clients can be referred to one of the three clinics, namely the
Kowloon Bay Integrated Treatment Centre (KBITC), Special Medical Service in Queen
Elizabeth Hospital and Princess Margaret Hospital (Community Forum on AIDS, Hong
Kong Advisory Council on AIDS and Hong Kong Coalition of AIDS Service Organizations,
2011). The KBITC provides quality clinical care together with effective primary prevention
to HIV-infected patients in an integrated manner (Red Ribbon Centre-UNAIDS
Collaborating Centre for Technical Support, Department of Health, Hong Kong, 2008). In
Singapore, there are a total of seven anonymous HIV test sites (six GP clinics and the
337
Action for AIDS anonymous test site); and the majority of HIV cases are managed in the
CDC by a multi-disciplinary team that provides medical, nursing, social, counselling and
other support (Ministry of Health, Singapore, 2010).
In Shenzhen, no general primary care clinic provides health care specifically for
PLWH. When PLWH go to these general clinics for health services, very few of them
disclose their seropositive status. Instead, they usually hide their seropositive status and
are treated as general patients. DH Hospital is the only designated hospital providing
medical treatment to PLWH/AIDS patients in Shenzhen, and it has received good
comments from its clients (PLWH who seek medical treatment from them). However,
physicians in the Love Clinic mentioned their capacity in providing medical treatment to
PLWH has reached saturation, and they just spent very limited time (e.g. five to ten
minutes) on each consultation. Therefore the integration of treatment, prevention and care
is largely limited. The CDC shares responsibilities in follow-up prevention services for HIV
positive MSM, such as CD4 count tests and virus load tests. However, it does not practise
integration of prevention and care. In this regard, it could be feasible to open more
designated hospitals or clinics providing medical treatment to PLWH/AIDS patients.
Lack of trust, respect and relationship establishment
Trust and respect are two important interactive styles between health care providers
and PLWH. PLWH seek care in better-equipped facilities and they have more trust in
health care workers with more medical education and training (Li, Liang, Wu, Lin & Wu,
2008). Trust can be regarded as trusting health care providers’ expertise or motives, but
also mean expectations concerning health care providers’ likely response to the issues
they raise: they have confidence that health care providers will not brush them off or belittle
338
them (McCoy, 2005). In the current study, trust was shown to include respondents’
confidence in the effectiveness and safety of free ART.
From an interpersonal point of view, trust is what respondents felt when health care
providers expressed respect. The experience of respect and suggested lowering of any
stigma from the health care providers appeared to be linked to health care providers’
understanding and acknowledging the weight and force, and the obduracy of difficult life
circumstances (e.g. poverty, depression or emotional pain); and the achievement of this
sort of respect can be an important aspect of access to health care for migrant HIV positive
MSM (McCoy, 2005). PLWH value easy access, easy negotiations and a quick service,
and the GP-patient relationship is valued for being familiar and ongoing; and many PLWH
strongly value their ongoing personal relationships with their general practitioners (GP)
(Huby, Porter & Bury, 1998). In the current study, trust between PLWH and health care
providers was still a serious problem since confidentiality and privacy are not protected
well in the CDC system, and the quality of health services and the professionalism of peer
workers and volunteers are still questioned by respondents. Lack of personal relationship
establishment among CDC staff and HIV positive MSM was explicitly presented.
7.6.2 Tailored participatory approach to health care and education for HIV positi ve
MSM
Comprehensive health concept and health services
Many respondents had low awareness and a lack of knowledge about mental health,
oral health, TB, hepatitis C, anal health and other health issues. They generally looked for
health care based on their perceived health status. When they perceived that they were in
339
comparatively good health, they presented less active in seeking health services. In this
regard, it is important to enhance a comprehensive health concept to newly diagnosed HIV
positive MSM through VCT, informal peer education or daily communications among peers
and friends. This comprehensive health concept should include physical health,
psychological and mental health, a healthy social life and social relationships. A study in
Hangzhou showed that migrants felt they needed help when they were depressed or
anxious; however, they were least likely to actually take action to get help (Li, Wang, Ye,
Jiang, Lou & Hesketh, 2007). Another study argued that it is traditional, even in urban
China, to seek help from informal sources, even in extreme situations (Hu, Higgins &
Higgins, 2006). Chinese society is generally a society that does not emphasize the
centrality of rights/entitlement. Self-care is a main concept in health care among Chinese
people, especially for migrants. Just as a respondent—Han—said that “because I don’t
have any family or relatives here, no close friends, only myself alone. If I continued in an
emotional slump, no one would help me…I therefore have to pull up my socks”. Relying on
self-care is common among many migrant MSM and they generally lack an understanding
of health services development and strengthening.
Systematically targeted and sustainable health services
A study in the US indicated that even when “user friendly” intervention delivery
procedure manuals are available, this resource alone is much less effective in helping
AIDS service organizations adopt the research-based intervention than approaches that
also provide intensive staff training in the delivery of the intervention as well as
individualized and tailored technical assistance to the organization, and that providing
information alone is likely to be a relatively ineffective dissemination strategy; active
collaboration between researchers and service agencies results in more successful
340
programme adoption than distribution of implementation packages alone (Kelly et al.,
2000). Therefore, systematic and sustainable health services and education among HIV
positive MSM are needed in order to improve their knowledge and practices of how to
manage HIV/AIDS, awareness of some easily ignored health issues (e.g. mental health
and psychological distress), where to look for services, and what matters need attention.
Well-trained NGO workers and volunteers can facilitate health care professionals to
identify those men in need. Health care should empower patients/clients and facilitate
them to look for help and information.
Volunteer activities as effective measures
Taking part in outreach or other volunteer activities appears to be an important way
for HIV positive MSM to adjust and rebuild their confidence in their daily life and conduct
virtuous interaction among the MSM community. For example, Zhao said, “I hope to make
good use of my spare time, and to help more people and to have a fulfilling life.” Providing
opportunities for HIV positive MSM to share responsibilities among the MSM community
can be a good way to open a door for them to go back to the MSM community as a
responsible member, which can build up their self-esteem and strengthen their identity of
being a member in the community, and increase their perception of ownership to their
community. In the focus group discussion, a volunteer said, “for this population, one
important thing is identity, realizing their own value. Only when they recognize their own
value, can they increase their confidence and reduce their feeling of distance from others.”
This points to the importance of dealing with the crucial issue of “spoiled identities”, which
is a core hindering factor in personal development or post-traumatic growth among HIV
positive MSM. Moreover, taking part in volunteer work is proved to encourage HIV positive
MSM to go back to more socially engaged functioning gradually, and therefore facilitates
341
them to adjust to their HIV positive diagnosis.
Other issues related to effective health services
In order to conduct effective health services, some other issues need to be
considered. Firstly, estimated benefits and effectiveness of health care services and social
welfare are other factors associated with their health service seeking behaviour, which has
been largely emphasized in the health belief model. When they estimate that they have not
obtained significant help from the basic living allowance in the Four Free and One Care
policy, they therefore present low interest in applying for it; and some respondents
regarded the follow-up service by the CDC as useless; they therefore quit it. Secondly,
emotional issues also need to be considered. Fear of disclosure is a typical obstacle in
health service seeking among newly diagnosed HIV positive MSM. When respondents
were in an oppressive mental health state, they might also be blocked from seeking health
services. It has been argued that hopelessness after learning of one’s serostatus may be
associated with a delay in seeking care (Raveis, Siegel & Gorey, 1998). The negative
psychological state, such as depression, anxiety and anger can negatively impact the use
of health services, and increase health care costs (Bing et al., 2001; Williams et al., 2005).
7.6.3 Necessity for developing MSM communities
Supportive services
An important feature of the social and organizational response to the HIV epidemic
has been the growth of a self-identified community of PLWH that has demanded to have a
say in the development of policies and the delivery of services (Roy & Cain, 2001). A study
342
in Canada found that most clients found the community-based AIDS organizations’
services helpful, reporting a reduced sense of isolation, increased knowledge of their
illness and how to live with it, and improved quality of life as a result of using the services
(Crook, Browne, Roberts & Gafni, 2005). Not-for-profit community-based AIDS service
organizations target multiple needs of PLWH who are less likely to use mainstream health
promotion and/or support services, such as counselling, information, skills development,
financial support, and referrals to other health and social services; and these services are
primarily client-driven and are provided in all types of venues (Williams et al., 2005).
Studies show that receipt of support or ancillary services such as case management,
mental health treatment, substance abuse treatment, housing assistance, and
transportation are significantly associated with early entry into and retention in HIV care
(Conviser & Pounds, 2002a; Conviser & Pounds, 2002b; Ashman, Conviser & Pounds,
2002; Sherer et al., 2002; Messeri, Abramson, Aidala, Lee & Lee, 2002). In the current
study, biomedical services played a major role in HIV/AIDS prevention and intervention
and had been substantially strengthened, but supportive services were still largely
underdeveloped. This is an important reason that prohibits the effectiveness of HIV/AIDS
prevention and intervention campaigns.
In Sydney, a positive employment service, including screening and assessment,
exploration of work issues, goal setting, facilitation of adjustment to change, facilitation of
the work decision-making process, provision of information and education about a range of
work options, and referral to appropriate vocational services and ongoing support, was
developed and aimed to increase productivity and quality of life through informed
decision-making about work options (Yallop, 1999). Continuing in employment is beneficial
to the health of PLWH, both in a physical and psychological sense (Apolonio et al., 1995;
Lutgendorf, Antoni, Schneiderman & Fletcher, 1994). Returning to work confirms that they
343
are once again a valuable and valid member of society, and the common reasons cited for
returning to work are financial gain, and psychological, social and emotional reasons, that
is to enhance self-esteem, relieve boredom, and enhance mental well-being (Yallop, 1999).
These studies highlight the important role of MSM community development and
community-based supportive services in HIV/AIDS prevention and intervention.
Greater involvement of PLWH (GIPA)
It has been widely recognized in international HIV/AIDS prevention and intervention
communities that the greater involvement of PLHW seeks to ensure that PLWH are equal
partners; and when communities are proactively involved in ensuring their own well-being,
success in HIV/AIDS prevention and intervention is more likely (UNAIDS, 2007). A list of
practical examples of GIPA activities has been developed, such as peer support, peer
education,
advocacy,
public
education,
counselling,
programme
planning
and
implementation, and public health policy and legislation (Asia Pacific Network of People
Living with HIV/AIDS, 2004). An essential point in GIPA is to empower PLWH to be equal
partners in HIV/AIDS campaigns. Development of peer support groups (including groups
of infected and affected people) is an essential element of GIPA, which opens the door to
more meaningful involvement as peer counsellors, educators, advocators and leaders.
Centralizing PLWH in the national HIV/AIDS strategy has been carried out in Australia, and
The National Association of People Living with HIV/AIDS, Australia is the highest body and
is funded by the Commonwealth Government to ensure the engagement and
representation of PLWH on treatment, legal, women’s, indigenous, international, care,
support and educational issues (The Australia Government, 2008). However, these
practices of GIPA are still largely absent in China or not conducted in a more real sense. In
the current study, grassroots organizations, such as the SRW and HPG, reported it being
344
very difficult to obtain funding from governments, even though they play very significant
roles of HIV/AIDS prevention, intervention and care among MSM and PLWH.
Potentials in the MSM community
On the side of the MSM community, grassroots organizations and NGOs are eager
to obtain technical and financial support from professional health care institutes or related
authorities to build up their capacity for providing better services to the MSM population,
and they have plenty of manpower, such as volunteers. Moreover, MSM business venues
and organizations also like to build responsible images in their communities, and they
have interest in working together with related authorities, through which they can build up
rapport with these authorities and therefore create a friendly business environment for
themselves in return. The development of the MSM community, especially the capacity
building of grassroots organizations and NGOs, is crucial in conducting effective
intervention against HIV. In real practice in Shenzhen, this cooperation is now developing.
Those MSM venues which take part in HIV/AIDS campaigns under the leadership of the
Shenzhen CDC can hang up a stainless steel plaque with the words “Jiankang Cujin
Chengyuan Danwei” (健康促进成员单位 Health Promotion Member), which can provide a
kind of protection when the police take action in entertainment venues. However, more
training needs to be provided to peer workers and volunteers in grassroots organizations
and NGOs, such as psychological counselling skills, communication skills, HIV/AIDS
knowledge, health services and social welfare navigations, and so on.
Need for health navigators to link service resources to HIV positive MSM
Furthermore, when nurses link multiple-diagnosed patients with needed health care
345
and other resources, these patients have been shown to have improved outcomes
including better follow-up visits for their appointments and increased abilities to deal with
barriers to utilizing services (Andersen, Smereck, Hockman, Ross & Ground, 1999). The
practices of health navigators in Fenway Community Health, Boston, also demonstrate the
practical meaning of health care workers (or peer workers) that facilitate and link patients
to some resources which therefore improves their health service seeking. In the current
study, Mr. K and Zhang took on a similar role in helping HIV positive MSM to obtain some
resources to manage their HIV positive diagnosis, such as helping them to meet the
required criteria and then obtain free ART. But this type of health navigator is informal and
very few in number in Shenzhen, and they are not well-organized and trained. What is
worse, a closer link between these peer workers and volunteers (health navigator) with
related authorities has not been developed well yet.
Supportive environment
Environmental support is an important issue. In the state of Massachusetts, USA,
the Massachusetts HIV Drug Assistance Program (HDAP) was launched by the
Massachusetts Department of Public Health to help HIV-positive individuals get the
medications they need. The HDAP is for Massachusetts residents on limited incomes, who
cannot otherwise afford HIV-related medications (Massresources.org, 2011). The HDAP
provides comprehensive HIV-related drug assistance benefits, including medications and
drug co-pays, private non-group health insurance premiums and premium co-pays, HIV
resistance testing (genotype and virtual phenotype lab tests), and post-exposure
prophylaxis (“PEP”) for potential non-occupational exposure to HIV. In the Netherlands,
under the Health Insurance Act, all residents are obliged to have health insurance. Further
to the above, the legislation prohibits insurance companies from declining health insurance
346
for persons (including HIV-infected individuals) who are legally entitled to be insured.
There is a system for governmental financial support to insurance companies to
compensate for costs associated with patients requiring costly care (the Netherlands
Government, 2010).
In China, in a study of the 4,714 migrant workers surveyed, only 14% had health
insurance and 10% had pension plans, whereas 79 and 91% of local employees had
health insurance and pension plans respectively (Feng, Zuo & Ruan, 2002). In the current
study, many (20/45) respondents were not covered by any type of health insurance.
Moreover, some respondents also directly attributed their non-utilization of health care to
their poor economic status. When some respondents were hospitalized they felt a heavy
financial burden due to the in-patient medical services. HIV positive peer workers also
justified the severity of this issue, since they witnessed some AIDS patients in very difficult
financial situations. CDC staff encountered embarrassment when some PLWH asked them
for money. Low social economic status and financial difficulty deteriorates the hardship
among HIV positive MSM. Just as in the case of Hei, he followed the guidance from CDC
staff to see a psychologist and underwent counselling free of charge. But he told me,
“What I think most is that I get diseases but I cannot afford to see a doctor…this is the real
problem that I cannot address.” This case explicitly shows that health care services are
closely related to respondents’ social economic issues, which indeed should not be
ignored. Moreover, this case also suggests that free health services are crucial for HIV
positive MSM, since the most vulnerable people are those who are at most risk of
becoming HIV infected, and the infection of HIV in return further deteriorates their most
fragile and vulnerable social and economic circumstances. A vicious circle of spiralling
downward—“vulnerability—HIV infection—more vulnerability” (e.g. loss on financial and
social capital) is then generated.
347
China has developed strongly economically and should learn from these two cases
(Massachusetts, USA and the Netherlands), which have presented two ways of covering
PLWH, especially those who are in economic hardship, by social health insurance and/or
private health insurance. Moreover, discrimination clauses against PLWH also need to be
removed from medical insurance term and conditions; practical procedures in the “Four
Free and One Care” policy should be modified; the coverage of VCT, free ART and
physical checks should be enlarged; public discourses in supporting equal rights of sexual
minorities and PLWH should be strengthened; and legal protection for couple relationships
among the homosexual population, such as civil union or legal marriage should be
provided.
Multiple benefits of MSM community development
Multiple benefits will be generated from the development of MSM communities.
Firstly, if more resources are allocated for the MSM community, it will work as a pushing
force and initiate a list of related movements, such as more parties and performances, and
therefore more opportunities for MSM to express their desires and voices through the arts.
Secondly, the physical shape or symbolic image of the MSM community will be clearer and
gradually recognized by the MSM population, which will facilitate the forming of a collective
identity of being a tongzhi or gay or homosexual. Third, health services and daily care in
grassroots organizations and NGOs, such as free condoms and lubricant, free counselling,
and favourable outdoor activities and entertainments, can be upgraded and improved. And
more volunteers can receive better training, and in turn provide better services to the
population. A positive trend will then be generated in the MSM communities, which will be
a strong power to build up a more positive tongzhi subculture, where MSM is not just for
sexual sensation, but more for self-fulfilling, self-love and responsibility. A better
348
self-esteem will be developed among this population, which is a strong power to fight
against the spoiled identity of being an MSM and HIV positive. Fourthly, highly motivation
and widely active participation of the MSM community will then be possible in this
HIV/AIDS campaign. That is the most important and crucial factor in an effective and
efficient campaign against HIV, since the MSM population will be empowered to take care
of themselves technically and spiritually.
7.6.4 Service implications
Integrating the current top-down approach with a grassroots approach
As presented above, the top-down approach has created several obstacles to
HIV/AIDS prevention and intervention, and therefore integration of a bottom-up approach
is needed. In the top-down approach, social control mainly relies on authority force, while
empowerment is a core practice in a bottom-up approach. In a bottom-up approach, what
health care authorities and institutes need to do mainly focus on facilitating HIV positive
MSM to practise self-care.
“Power arises from meaning” (Hawkins, 2002: 132). The meaning behind
empowerment practices in a bottom-up approach is respect, care, responsibility and
leadership. Only when the CDC builds a positive image among the MSM population, can
the CDC acquire great power to influence this population positively. In building up a
positive image, the CDC should not rely on authority force, but instead the CDC should
nurture partnerships establishment among MSM communities by setting up an equal
interaction platform. For example, it is a good way to set up a community-based HIV/AIDS
prevention and intervention executive committee by recruiting MSM community leaders,
349
tongzhi activists, passionate scholars and professionals. And HIV positive MSM should be
significantly represented on this committee. This committee can function as a privy council
and an effective link between officers, health care providers, HIV positive MSM,
professionals, scholars and researchers.
This is a good platform for forming leadership and facilitating coordination and
collaboration among authorities, health care institutes, NGOs, CBOs, MSM business
organizations, and grassroots groups. And then, significant amounts of funding from
central or local governments should be distributed directly to MSM communities, especially
focusing on HIV positive MSM groups. It is the government’s responsibility to take care of
its citizens, especially those people who are of a marginalized or vulnerable status. And
there is also a basic principle of greater involvement of people influenced by HIV/AIDS.
Only when HIV positive MSM are empowered, can the asymmetric power relationship be
changed and ideology of empowerment, which embraces respect and care, overtake the
tendency of controlling. In the context of Shenzhen, NGOs (Hong Kong-based NGOs
included) have been developing significantly. Some grassroots organizations also work
closely with the CDC system, such as the SRW. Authorities (e.g. the CDC), health care
institutes, NGOs, CBOs or grassroots groups have good cooperation. When appropriate
funding is available, closer coordination and collaboration will be possible. The sources of
funding should be social welfare or social service funding. In contemporary China,
governments using funding to buy social services from related organizations has become
a hot issue. For example, governments can provide funding to MSM or PLWH
organizations to cover supportive services for HIV positive MSM, such as network building,
information sharing, living skills rebuilding and job hunting facilitation.
350
Strengthening the competence of health care providers
Since a list of problems of health care providers has been identified, in order to
provide effective intervention among HIV positive MSM in Shenzhen, it is necessary for the
CDC to work together with tongzhi activists and experienced researchers to develop
systematic training for improving cultural competence in related health issues among HIV
positive MSM and carry out programmes to educate health professionals about these
specific health concerns, such as demographic and social environmental issues of HIV
positive MSM, sexual history and sexual risk reduction counselling, adjustment after newly
being diagnosed HIV positive, disease prevention and health promotion, and specific
health needs (e.g. anal health, oral health, erectile dysfunction and relationship therapy).
Moreover, the CDC should work with specific psychiatric and mental health
hospitals (e.g. KN Hospital in Shenzhen) to provide specific psychological and mental
health training to those health care providers who work on HIV and MSM issues, so that
they can identify the most at risk PLWH. And they need to improve their competence of
stress management, so that they can find ways to cope and release themselves in case of
necessity. TCM hospitals should also be encouraged to play a role in facilitating self-care
for HIV positive MSM, such as how to use alternative TCM to improve immune system.
Health care providers also need to strengthen their competence in integrating
prevention, treatment and care in their work. For example, they need to be trained on how
to provide effective psychological and social support and care to their clients or patients in
their work (e.g. medical visits) or daily interactions with HIV positive MSM. Moreover, in
order to build up trust and respect with HIV positive MSM, health care providers need to
seriously deal with the problem of confidentiality and privacy protection, especially in the
351
local CDC system. On the other hand, it is also important to improve the quality of health
services and the professionalism of peer workers and volunteers, which will make HIV
positive MSM become more confident to health care providers and peer workers. An
appropriate personal relationship between health care providers and HIV positive MSM
can enhance their health service utilization and strengthen a positive influence from health
care providers. In this regard, health care providers should build up personal relationships
with their clients or patients to some degree.
Developing participatory health care
In order to develop effective HIV prevention and intervention among HIV positive
MSM, a participatory approach needs to be adopted. In participatory health care, a focus is
to activate HIV positive MSM to take part in health care, such as goal setting, establishing
contracts for treatment, rapport building, named staff members and continuity of care
provider.
The CDC should conduct more workshops or lectures on how to manage HIV/AIDS
on a daily life basis among PLWH and HPG can be the coordiniator and facilitate
managing these workshops/lectures. In these workshops or lectures, professional
knowledge and HIV positive peers’ practical experiences should be shared and discussed,
so that participants can develop a more holistic view of health (e.g. physical health, mental
health, healthy social relationships and well-being). When HIV positive MSM are improved
in their health literacy, they can take better care of themselves. For example, they can
better evaluate their own health state and know where they can consult health services. It
should be more sustainable. Moreover, the CDC should develop booklets on nutrition for
PLWH, stress management kills, and social network and personal relationships
352
maintenance and development.
Volunteer work is a typical participatory health care for HIV positive MSM in
Shenzhen. Through volunteer work, HIV positive MSM can actively obtain related
knowledge and information; and more practically speaking, they can practise what they
know or learn to help others. In this regard, the CDC in Shenzhen should work with HIV
positive groups to initiate more HIV positive peer volunteers. On one hand, it can closely
link HIV positive MSM with the CDC health care network; on the other hand, the CDC can
recruit more and more HIV positive MSM to take part in training or related services through
snowball recruitment. A next step is to develop active HIV positive peer volunteers and
then facilitate them to develop different types of HIV positive groups (e.g. small supportive
groups), such as qq groups, outdoor activity groups, or other interest and hobby-based
groups. Therefore, peer education and care can be strengthened and practically improve
the health literacy in the whole MSM community.
Developing the MSM community
In Shenzhen, HIV positive groups are really at a very preliminary stage. The HPG is
an example, where only one peer worker has been hired. And this peer worker did not
receive any professional or systematic training before he took this job. This peer worker
didn’t know how to manage his stress and self-reported a rapid decrease in his health after
taking this job. Other HIV positive groups do not have the funding to hire peer workers at
all and rely on volunteers. Even HIV positive MSM are very diverse. This calls for more
direct financial and technological support for these grassroots HIV positive groups. The
CDC has taken on major responsibilities for managing HIV/AIDS issues; however, it
encounters limitations as well. For example, it does not have the resources or mandate to
353
build up MSM communities, and they have to work under the policy of the government. But
the CDC can do something, such as provide more technical support and make resources
available to MSM grassroots organizations or NGOs to develop a true partnership (e.g.
autonomy, communication, trust, fairness, training, etc.). Practically speaking, for example,
the CDC can work closely with the SRW or HPG to pick up some active HIV positive MSM
as seeds, and provide them intensive and systematic training, such as how to organize a
group, how to conduct counselling, how to identify PLWH in serious mental health
conditions, and how to provide emergency help. Through these seeds, the CDC can
further recruit more active HIV positive MSM as seeds to provide tailored and flexible peer
support to other HIV positive MSM. Social welfare and social development have
increasingly become focuses in China governments and NGOs have been allowed to
legally register in Guangdong province since 2012. It is possible for the CDC to submit
suggestions to governments to buy HIV/AIDS-related social services from NGOs or
not-for-profit community-based AIDS service organizations. It is a practical strategy to ask
for funding from governments, since buying social services from social organizations has
been a hot topic in both academic and political debates in contemporary China. For MSM
communities, they can also actively use social capital to improve social support for
HIV/AIDS campaigns. For example, they can look for support and alliances from people
who are affected by HIV/AIDS as well, such as families, relatives or friends of PLWH, and
develop support groups among them. The Tongzhi Families and Friends’ Association in
Guangzhou is a successful example, which provides very significant social and
psychological support to the MSM population, HIV positive MSM included. More of these
kinds of organizations should be encouraged and facilitated to be set up.
354
Chapter 8 Discussion and implications
8.1 The occurrences of UAI and its hidden meaning
When we compare the testimonies of respondents who practise more UAI with
those who consistently use condoms, those who practise UAI more regularly admitted to
exercising much less self-protection (e.g. less awareness of how to avoid infection or
cross-infection), lower self-esteem and diminished dignity (e.g. lower self-expectation to be
a well-behaved person), and low anticipation of hope for the future (e.g. feeling no love
was possible within MSM circles), and showed little respect for self or for others (e.g. “who
knows who transmitted it to you! I even don’t know who transmitted it to me!”). Their
contact with MSM grassroots organizations or NGOs or HIV positive groups was also
minimal, and they did not engage in volunteer work to contribute to the MSM communities.
Moreover, the partners of respondents who practised UAI fell into three categories, such
as lovers and stable partners, casual partners, and commercial partners, and this typology
helps to explain why the reasons for engagement in UAI were different. For lovers and
stable partners, it was mainly because respondents feared losing their partners in a
non-disclosure context. For casual partners, this was mainly attributed to anonymous
sexual encounters and moral judgments. For commercial partners, it was mainly because
clients refused condom use and MBs lacked socio-economical/capital power to negotiate
condom use.
In the socio ecological model posed, the occurrence of UAI was not only directly
associated with specific personal factors, such as self-esteem, self-efficacy, hope,
personality and belonging to MSM communities, but also associated with macro
embedded contextual factors, such as social structural violence—“the social machinery of
355
oppression” (Farmer, 2004: 307), which forced many HIV positive MSM into a highly
stressful circumstances. The occurrences of UAI therefore must be investigated and
interpreted at the backdrop to multiple and intertwined social structural violence within the
perspective of social ecology, adaptation theory and cognitive anthropology.
Until now equal rights for the gay/tongzhi population, such as legal same sex
marriage, and anti-discrimination laws protecting sexual minorities in employment and
schooling, are not addressed in China. This is a key factor that blocks many MSM, HIV
positive MSM included, from entering into a monogamous relationship and increasing the
instability of same sex couples socially and psychologically. This is why so many
respondents complained that it is difficult to look for a lover or stable partner in MSM circles
and they felt a degree of hardship and hopelessness in their lives. It is therefore very
difficult for egalitarian role models to emerge in such oppressive circumstances among the
tongzhi/MSM population.
National HIV/AIDS campaigns have been carried out in China for years, but the
development of MSM community and self-pride and self-esteem establishment among
MSM population are still largely ignored. MSM circles are disorganized and chaotic, and
lack clarity, legal and social support, internal regulations, and collective values. There is
considerable social structural violence against the tongzhi/MSM population, which is the
source of the widely existing low self-esteem, low self-efficacy, less hope and lack of
confidence among the MSM population. Gradually, a spoiled identity—“a discrepancy
between an individual’s virtual and actual identity, which has the effect of cutting him off
from society and from himself so that he stands as a discredited person facing an
unaccepting world” (Goffman, 1968:31)—has been internalized among MSM circles in that
tongzhi/MSM are bad and dangerous, and tongzhi/MSM circles are disappointed and
356
hopeless. After MSM become HIV infected, their situation becomes worse. The problems
that HIV positive MSM encounter are very common among the general MSM population,
specifically highly interpersonal concerns about social isolation and social connectedness,
including that they need partners; that they need a supportive and friendly social and
community environment; that they need a more positive and healthy MSM community, and
that they need equal social economic power with the rest of society.
Except personal and environmental factors, intentional activities are the third
meaning behind the occurrences of UAI. For example, whether respondents would like to
face their own problems, take action to change their lifestyle, help peers and contribute to
the MSM community, and care about the development of the MSM community or HIV
positive groups. All of these are also important for HIV positive MSM to establish more
positive lifestyles (e.g. elaborating happiness in Sheldon & Lyubomirsky, 2006;
Lyubomirsky, 2008). Attitudes and behaviour related to health are understood as being an
integral part of the overall lifestyles of a society, a social group and an individual
(Kickbusch, 1989). Unsafe sex practices are therefore actually a component of a negative
and chaotic lifestyle, and the practices of safe sex need to be built up based on the multi
factorial aspects that contribute to a positive lifestyle, within a framework of state
sustainability.
8.2 Informing the future HIV epidemic among MSM in Shenzhen
Most respondents self-reported stopping UAI after being diagnosed HIV positive,
and most respondents expressed a strong desire to survive and avoid further deterioration
in their health, and many respondents also expressed altruism towards others as a kind of
self-affirmation. These motivations worked together to enable newly diagnosed HIV
357
positive MSM to avoid UAI. In this regard, it seems that the rate of secondary HIV
transmission among the MSM population in Shenzhen will drop or the increasing speed
would reduce, if large-scale HIV screenings are continuously conducted by the Shenzhen
CDC so most MSM who are sexually active get to know about their serostatus. Free VCT
is available in every district CDC, but its utilization is generally low. The estimated number
of MSM in Shenzhen is 63,248 (57,261-89,235) (Cheng et al., 2008). In 2010, newly
diagnosed HIV positive people/AIDS patients numbered 919, among which 300 (32.6%)
were homosexual or bisexual (Shenzhen CDC, 2010). Based on personal communications
with CDC staff and active senior volunteers, the HIV prevalence in Shenzhen was
increasing by about 6.7%-10% in 2009-2011, which is lower than other cities in China,
such as 14.2% in 2010 in Chengdu (Chengdu Gay Care Organization, 2010), 15.3% in
2010 in Beijing (Wu et al., 2011) and 12.5% in 2007 in Chongqing (Feng et al., 2009).
Shenzhen is a promising city in China that may act as a role model in successfully
controlling the HIV epidemic.
On the other hand, account also needs to be taken of the fact that UAI happened
occasionally among some respondents. Most HIV positive MSM still mainly had sex with
casual partners, since lovers or stable partners were generally unavailable. The sexual
interaction between casual partners was informed by a number of characteristics. First, it
was instant desire-based and many respondents reported that when they felt empty and
lonely they had a stronger desire to have sex; second, it focused only on physical
sensation instead of affectionate interaction and therefore there was no relationship
establishment, which usually deteriorated their feeling of emptiness and loneliness after
having casual sex. Sometimes it also carried comorbidities of substance abuse, such as
alcohol and recreational drug use. A vicious circle between substance abuse and
psychological and mental health problems was therefore generated, which deteriorated
358
these men’s psychological and mental health. Tongzhi saunas were specially desired
sexual spaces where casual sex was reported to happen very frequently and UAI was also
reported to happen a lot. Much more UAI occurred with casual partners and casual sex
was the major sex indulged in among the MSM population. In this regard, the occurrences
of UAI will still be frequent among MSM, HIV positive MSM included.
Among lovers and stable partners, UAI still happens occasionally. A major reason is
fear of losing partners, since it is generally difficult for MSM to look for a lover or stable
partner, and even harder for HIV positive MSM. For those newly diagnosed HIV MSM, they
especially need somebody around, who will provide them psychological and social support.
Sero sorting is not realistic in practice since only few HIV positive MSM successfully look
for sero-concordant partners. Since the desire for intimacy and feeling of trust and love
exercise generally stronger power among lovers and stable partners, UAI happens
comparatively easily as it is still hard for HIV positive MSM to disclose their serostatus to
their lovers and stable partners.
Commercial sex is another important source of new HIV infections. MBs are
generally young, handsome and healthy looking, and therefore reduce some clients’ risk
perception. It has been reported many times that clients do not want to use condoms. The
interaction and negotiation over condom use among MB and clients are also tricky. When
MB insist on condoms use, it may make some clients think that this MB is “clean” since he
strongly asks for condom use, and allows these clients to reduce their risk perception. Up
to now there is no specific project targeting the clients of MBs, and MBs have become
more active in contacting their potential clients since commercial sex has become more
competitive and many more young men who lack experience of safer sex and condom use
have entered the sex industry. All of these factors push UAI to happen continuously among
359
commercial sex partners.
Furthermore, the above discussions of UAI occurrences need to be considered in
the backdrop of contemporary HIV/AIDS prevention and intervention campaigns and
health services in Shenzhen, which are actually important components of the social
conditions underlying the practice of UAI. It can be seen in the current study that there is a
lack of ideas and practices in setting up healthy MSM communities. MSM communities
have not been developed yet and therefore MSM communities are not empowered in the
campaigns against the HIV epidemic and cannot develop sufficient capabilities to provide
effective responses to the epidemic. In the aspect of health services, mental health
services for HIV positive MSM have been ignored; less attention is paid to misconceptions
of risk and safety in health education campaigns; HIV positive groups have been further
marginalized and seriously lack social and financial support; there are still significant
practical problems in the current Four Free and One Care policy and related services; and
specific MSM health care, such as oral health and anal health, are also absent. All of these
factors have constructed considerable barriers to HIV positive MSM practising self-care
and mutual help with peers. It therefore restricts effective responses of newly diagnosed
HIV positive MSM, especially those who have negative personalities or have encountered
social psychological problems. It is clear that the current HIV/AIDS prevention and
intervention campaigns fail to address the post-test adjustment among newly diagnosed
HIV positive MSM, and has not successfully changed the social environments where the
occurrences of UAI are embedded.
Based on a comprehensive consideration of both positive and negative, and
personal and environmental factors associated with the occurrences of UAI, it can be
estimated that significant numbers of new HIV positive cases will be expected in the short
360
run, even though the infection rate might be stable. In other words, HIV prevalence among
the MSM population in Shenzhen will still increase, albeit in a slower speed.
8.3 Difficulties of controlling the HIV epidemic among MSM
Modifying the current top-down approach
A big difficulty in the mainstream HIV/AIDS prevention and intervention practices is
that authorities (e.g. the CDC system) do not realize that their targeted population, HIV
positive MSM and general MSM, is actually a very important and reliable source of power
in the HIV/AIDS campaign. The involvement of affected communities in the design and
implementation of policies and programmes is a core principle of an ethical and effective
response to HIV/AIDS (UNAIDS, 2007). A study in the US showed that predictors of
success in implementing HIV prevention were associated with more gay community
infrastructure
and
a greater proportion
of
funds
contracting
community-based
organizations and on MSM-targeted programming (Rosser & Horvath, 2008). Building
stronger partnerships between affected communities, service providers and researchers
can have a mutually beneficial effect (Asia Pacific Coalition on Male Sexual Health, 2008).
In China, the power of MSM communities has not been developed yet and in a way it has
been oppressed. For example, if the CDC had consulted MSM communities and their
activists before carrying out the real name scheme in HIV diagnosis, it could have reduced
the fallout, such as scaring MSM and increasing distrust among them. Another practice of
the top-down approach is presented in the issue of confidentiality and privacy protection.
Some respondents complained that the CDC system does not really protect their privacy
and their seropositive statuses were disclosed by CDC staff in their hometown. Dominated
by a top-down approach, health care providers may view it as a common practice of not
361
fully protecting patients’ need of confidentiality and privacy. It has made some HIV positive
MSM afraid and they refuse to finish the diagnosis and stop contacting the CDC, thereby
reducing the effectiveness of HIV prevention. What related authorities should do is
facilitate and cultivate the development of MSM communities and therefore empower MSM
to take care of themselves. The management of the current HIV/AIDS campaign needs a
bottom-up approach, instead of a top-down approach, so that more practical solutions can
be derived from the MSM population. A first step of developing a bottom-up approach is
setting up a mechanism for consulting MSM communities and their organizations and
groups before carrying out activities, policies or programmes.
Issues with the allocation of funding distributions
The Chinese government tries to fulfil its promises to take care of PLWH, and a
huge amount of funding has been spent on HIV/AIDS prevention, treatment and care. In
recent years, significantly increased funding has been dedicated to HIV/AIDS. In 2009, the
funding from central government reached RMB1.22 billion, and the funding from local
government reached RMB610 million (Ministry of Health of People’s Republic of China,
2010). However, the distribution of this funding is problematic, since very limited resources
have been distributed directly to MSM communities. Based on the “China 2010 UNGASS
Country Progress Report”, only international funding, such as the Global Fund and UN
Agencies, provide certain resources in supportive environments or social protection and
social services in China. In the current study, a leader of a grassroots MSM organization
said that the only source of funding they can apply for is the Global Fund. However, the
Global Fund is competitive and just provides very limited funding on a yearly basis, such
as RMB30 to 40,000 per year to successful applicants; and each organization can only
apply for one programme each year. Even if a grassroots organization is lucky enough to
362
obtain funding, it is far from enough to cover even the total rent and utilities of the office for
one year. Limited funding prohibits the development of these MSM organizations, and
therefore restricts their effective responses to the HIV epidemic. Even though fundraising
is becoming possible among MSM communities, such as charitable events arranged to
raise funding to support deaf and dumb people or personal donations to HIV positive
groups, these community fundraising activities are still on a small scale and small amounts
of funds are raised. Governments and related authorities still need to share the major
responsibilities in providing funding to support social development of this socially
marginalized and vulnerable population.
MSM grassroots organizations and HIV positive groups reported local CDCs not
providing funding to them, while local CDCs explained that fixed funding is for a fixed
purpose and no specific funding is available for MSM communities. In other words
governments do not provide them the resources to support MSM communities’
development and they can only provide technical support and limited project funding. In a
speech in the School of Public Health and Primary Care, Chinese University of Hong Kong,
a visiting gay activist and leader of an MSM organization said that in China it is because
different CDC officers search for obedient grassroots MSM groups to work for them, so
that these MSM groups have to compete a lot with each other in order to gain funding.
Even though not enough data implicate an AIDS political conflict, the problem of
disproportionate funding distribution is of considerable concern, no matter if attributed to
CDC officers or grassroots MSM groups or organizations.
Constraints on the development of the MSM community
Many HIV positive MSM join HIV positive groups (grassroots HIV positive groups,
363
positive QQ groups and small supportive groups included), but these groups cannot obtain
technical and financial support from the government. During my fieldwork, only one
grassroots HIV positive group reported obtaining limited funding from an NGO whose
office was located in Kunming. Inherent conflict between grassroots organizations, NGOs
and the government is another issue. The relationship between the CDC and HIV positive
groups is tense to some degree. The CDC worries about PLWH, HIV positive MSM
included, gathering together and creating trouble for them, such as “wei quan” (维权
safeguard legal rights), which is a sensitive issue in China. A widely reported case is “Tian
Xi”, who got HIV infected through blood transfusions in Xincai County People’s Hospital,
Henan province, when he was hospitalized at his nine years old. He was college educated
and tried to enforce his legal rights. He tried to sue the hospital, but the county court
refused to place it as a case on file for investigation and prosecution. Even his attorney
agent was informed by the attorney administration office, Beijing Municipal Bureau of
Justice, that “HIV infected cases through blood transfusion are related to local stability and
attorneys need to be careful” (Li, 2010). “Maintaining social stability” is a core political
discourse in contemporary China, and is raised higher than law sometimes. Local CDCs
are small departments in the state machinery and therefore worry about getting involved in
this issue. On one hand, the CDC relies on the MSM community to conduct HIV prevention
and intervention. On the other hand, the CDC worries that the MSM community might grow
up strong enough to negotiate with it or cause it trouble. This is the biggest barrier to
effective HIV prevention among the MSM population at this stage in Shenzhen.
Lack of HIV positive MSM specific programmes and strategies
Strategies in HIV prevention among the MSM population mainly focus on promoting
condom and lubricant use. The concrete practice in Shenzhen is that the Shenzhen CDC
364
provides free condoms and lubricant to grassroots organizations, such as the SRW, and
the SRW has volunteers to conduct health education among MSM peers and distributes
condoms and lubricant to MSM venues and individuals. For HIV positive MSM, there is no
specific measure to promote condom and lubricant use among them. Moreover, up to the
end of my fieldwork, no specific programmes, activities or strategies were carried out to
address the issue of secondary HIV transmission among HIV positive MSM. The current
research findings show that newly diagnosed HIV positive MSM experience a list of
problems, such as emotional and psychological problems, misconception of risk and safety,
interaction and negotiation with sex partners, disclosure and sero sorting, etc. These
problems are quite special and different from those of general MSM. This calls for HIV
positive MSM sensitive programmes to address secondary HIV transmission among this
especially vulnerable and high-risk sub-group. For example, secondary HIV transmission
prevention among newly diagnosed HIV positive MSM should encompass comprehensive
and inclusive training, conducted in groups and organizations, and focus on self-care,
skills of alternative safer sex, psychological and mental health, emotions, strategic
disclosure, social relationship development and maintenance. And then these trained
groups or organizations should motivate their peers and volunteers to conduct peer
education and refer those men in need to professionals.
Time specificity of intervention
For newly diagnosed HIV positive MSM, time specificity is an important issue. At the
very beginning of the diagnosis, these men are going through a crucial adaptation process,
and it is an important opportunity to carry out health education and intervention to facilitate
these MSM to integrate their suffering experiences to rebuild a more active and positive
lifestyle. Hawkins (1995) argued that although motives for change are as multitudinous as
365
the innumerable facets of the human condition, they are most often found to arise
spontaneously when the mind is challenged in the face of a puzzle or a paradox, such as
being newly diagnosed HIV positive. At this critical moment when their personal worldview
has been shattered and they are in the way of rebuilding it, it is an opportunity to facilitate
an upward movement in consciousness for individuals (e.g. post-traumatic growth), and
individuals may be encountering risks of a downward movement as well (e.g. more
negative worldview). The most important element in facilitating an upward movement in
consciousness is an attitude of willingness, which opens up the mind through new means
of appraisal to the possible validity of new hypotheses (Hawkins, 1995). An accurate and
immediate response will improve the effectiveness of prevention of secondary HIV
transmission among these men. For example, the CDC should work with psychological
and mental health professionals to provide health care providers, peer workers and
volunteers systematic and practical training on how to identify people at risk of
psychological, mental and/or emotional problems. After they identify someone in need they
can immediately refer this man to professionals for more specific counselling and
treatment, such as cognitive behavioural therapy. In MSM organizations or HIV positive
groups, trained peer workers and volunteers can cooperate with professionals to facilitate
specific treatment for patients, such as helping with social involvement and psychological
support on a continuous and regular basis.
Maximizing the effect of existing resources
Based on interviews with CDC staff, peer workers and some PLWH’s actual action
to access free ART, it can be seen that the Shenzhen CDC does not have the capacity to
cover every PLWH who needs ART, even though they try to include as many PLWH as
possible in its free ART programme, related physical checks included. This is one of the
366
sources of conflict between the CDC and PLWH. Some HIV positive MSM want to have
free ART in Shenzhen, but they are ineligible based on the national regulations on free
ART management. The CDC and its close grassroots organization provide free ART to
those PLWH who contribute to the community and HIV prevention. They try to encourage
other PLWH and let them cherish this quota of free ART. In this practice, the CDC utilize
the power and resources in their hands to formulate a virtuous circle of helping ourselves
and promoting a social value that those responsible and kind people are rewarded. On the
other hand, it also creates stress for deviant PLWH who practise or intend to transmit HIV
to others in that they may be socially abandoned. This practice is debatable since ART
should not be a reward and ideally it should be distributed to everyone in need. This
practice represents a kind of false equity. But it should not be simply criticized, since in a
setting with limited ART resources, how can this resource be used to effectively achieve
maximum effectiveness in HIV prevention? How should PLWH be made to cherish free
ART? How should free services promote condom use among PLWH? For ineligible PLWH,
the practice in Shenzhen is to provide free ART to those PLWH already in a serious health
condition at the time of diagnosis. For those PLWH still in a comparatively good health
state, the CDC pushes them to go back to their places of permanent residence for
registration for free ART. Even though the practice of selectively providing free ART to
ineligible PLWH is problematic, it still achieves maximum effectiveness in HIV prevention.
A reform of free ART management should be carried out in Shenzhen, the first special
economic zone in China, such that ineligible PLWH can use their ID (the ID management
system has been upgraded nationally in China) to apply for free ART, since the real name
scheme in diagnosis has been launched. It would then follow that their personal profiles
can be set up on the HIV Internet Report System (艾滋病网络直报信息系统), and free ART
utilization information can be shown in this national e-system which could then be
transferred for the use of free ART in every county/city in China.
367
8.4 New HIV prevention approach
Facilitating self-care as a key to positive lifestyle adaptation
Data in previous chapters show that biomedical measures are the mainstream
approach for HIV prevention and intervention among the MSM population in Shenzhen,
including large-scale HIV screening, regular CD4 count and virus load testing in follow up,
free ART and related medical checkups, TB control, complications treatment, and free
syphilis and condyloma acuminate treatment. Peer education and free condom and
lubricant distribution are carried out in MSM communities by grassroots organizations and
their volunteers. Other NGOs (e.g. CH Foundation or XY) provide a limited amount of
health education, and condom and lubricant distribution.
Compared with professional medical care, self-care is a form of “lay, community and
alternative health care” (Kickbusch, 1989) whereby health care providers pay less
attention to it but self-care is practised frequently among HIV positive MSM. Self-care in
health has been defined as “all activities that individuals undertake with the intention of
improving health, preventing disease, limiting the effects of illness, and resorting health
after illness or injury” (Thorne, Nyhlin & Paterson, 2000). Self-care practices are used to
manage symptoms or other effects of chronic illness as determined by a person’s
decision-making ability, knowledge of available resources, and the capacity to use the
available resources (Kemppainen et al., 2003). Self-care decision-making is arguably
depicted by individuals as a complex developmental process that takes place within the
context of a disease trajectory, a health care culture, and a uniquely meaningful life
(Thorne, Paterson & Russell, 2003). Self-care behaviour among PLWH can be identified in
some
categories,
such
as
medications,
self-comforting,
complementary
368
treatments/therapies, daily thoughts and activities, help seeking, spiritual care, stress
management, diet, adequate sleep, and exercise and rest (Gielen, McDonnell, Wu,
O’Campo & Faden, 2001; Nicholas et al., 2002; Chou, Holzemer, Portillo & Slaughter,
2004). Persons who engage in self-care practices are more likely to seek treatment in a
timely manner and greatly enhance their quality of life (Stearns et al., 2000). In the current
study, most attempts at self-care are shaped by the current cultural framework around
HIV/AIDS and the MSM subliminal level embedded thinking in China.
Self-care in psychological and mental health
In the previous chapters, after being newly diagnosed HIV positive, it was explained
that the respondents relied on self-care to deal with psychological and mental health
problems, and very few of them would look for professional care. Firstly, HIV/AIDS is
socially constructed as an incurable disease, shortening life expectancy and making
PLWH feel hopeless. Many newly diagnosed HIV positive MSM rely on their hope for new
drugs that can cure HIV, and many of them rebuild their lives through helping others and
reaping reciprocal benefits. These thinking and activities made them feel much better.
Secondly, HIV/AIDS, as a heavily stigmatized disease, causes these men high
degrees of stress, and they really need someone to talk to, so that they can give vent to
their stress and emotions. Many newly diagnosed HIV positive MSM therefore confront
their traumatic experiences through directly talking to somebody they trust, or fully utilizing
counselling that the CDC provides and some of them even perceive kind and patient CDC
staff as their significant others and repeatedly look for helps from them. These practices
significantly relieve their stress and provide them with more information and knowledge.
369
Thirdly, HIV/AIDS is culturally constructed as being transmitted through doing
something “bad or immoral” or out of the ordinary, and therefore PLWH are stigmatized
and this stigmatization is internalized. Some newly diagnosed HIV positive MSM turn to
their religion, such as Buddhism and Christianity, to understand why they have become
HIV infected, and then they obtain acceptable interpretations in their beliefs, such as a test
from Buddha or their fate. These interpretations comfort them spiritually and make them
ready to receive this diagnosis. These practices reduce their internal struggling.
Fourthly, HIV/AIDS shatters the worldview of many PLWH, and makes them suffer
from cultural trauma to a certain degree, such as losing face, encountering taboos, and
failing to fulfil filial piety. Many newly diagnosed HIV positive MSM reinterpret their
experiences from more active and positive perspectives, looking on the bright side, being
optimistic about the treatment, actively looking for help, looking for new meanings, such as
“instinct to live”, and they also conduct intentional activities to rebuild their worldviews.
These practices act as effective coping strategies of adjusting to the diagnosis.
Fifthly, HIV/AIDS informs a social death, notions of dislocated membership of
personhood, and being isolated or given up on. Many newly diagnosed HIV positive MSM
continue looking for sero-concordant or discordant partners, and some of them are
accepted by their lovers. Some of them also obtain social support from CBOs, families,
friends, peers and colleagues. These practices build up a more supportive environment for
themselves.
Self-care in managing sexual risk
The social expectation of being an HIV positive MSM is one of not transmitting HIV
370
to others. Newly diagnosed HIV positive MSM are expected not to have sex and should
reduce their sexual activities or limit their sex partners to PLWH. In terms of managing
sexual risk, avoidance of transmitting HIV to others and getting infected again by other
viruses actually go hand in hand. Professional health care providers, such as CDC staff
and physicians in hospitals, only emphasize condom and lubricant use, while sexual
practices, especially alternative safer sex practices (e.g. using sex toys or other sexual
measures instead of penetrative sexual intercourse), are generally ignored in professional
medical care and counselling. Self-care played a much more significant role in managing
sexual risk. Newly diagnosed HIV positive MSM practise diverse self-care behaviour,
including abstinence, reducing sexual activities, reducing anal sex while increasing oral
sex and masturbation as alternative sexual activities, increasing condom and lubricant use,
looking for sero-concordant sex partners, improving negotiating skills, deliberately
performing the sexual role of being penetrated which is believed to have a lower risk of
transmitting HIV to partners who practise penetration.
Self-care in health service seeking
In China, only a small part of the population is covered by medical insurance. In the
current study, PLWH or AIDS patients to a great extent rely on self-care in seeking health
services. Culturally specific health care among Chinese is that they generally prefer to
obtain health care through informal ways, such as families and relatives, friends, peers and
acquaintances (Hu, Higgins & Higgins, 2006). Respondents’ major self-care behaviour
included searching for related information from HIV positive peers or groups and asking for
help from friends to obtain free ART when they are not eligible. Some respondents also
paid for CD4 count tests themselves and sought medical surgery from small hospitals
when they were rejected in big hospitals.
371
The pitfalls of unsupportive self-care
The above elaborations on self-care among newly diagnosed HIV positive MSM are
practised largely without professional support or guidance. Respondents sometimes may
put themselves at risk. For example, self-care in psychological and mental health may
make some respondents miss the best time to treat their mental health problems, and
therefore postpone their recovery, or may make these mental health problems become
more serious; the practice of performing the sexual role of being penetrated is not really
free of HIV transmission risk, and oral sex without a condom also carries the risk of
infection with other STIs; the use of alternative medication (e.g. TCM) in controlling HIV
viral load and improving CD4 count is problematic, since it may deteriorate their health
state once such alternative medication is not indeed good. It has been argued that
self-care management in chronic illness is the daily requirement to make decisions and
select from options in relation to issues as wide-ranging as medication, diet, rest and
activity, symptom monitoring, deciding when and how to seek help, and other
considerations (Hurley & Shea, 1992; Oram, 1992). Effective self-care decision-making is
to some degree influenced by professional treatment recommendations (Thorne, Paterson
& Russell, 2003). In this regard, self-care practices of HIV positive MSM need professional
support in order to result in better effects, including support and guidance from medical
doctors, psychiatrists, psychologists, TCM practitioners, nutritionists, nurses and other
related professionals.
Facilitating self-care in both formal and informal health service delivery systems
From the above discussion, self-care is “lay, community and alternative”, but is also
related to professional care. In order to facilitate self-care among HIV positive MSM,
372
improvement in both formal and informal health service delivery systems is needed. In the
formal health service delivery system (e.g. the CDC, CD Hospital, DH Hospital and KN
Hospital), health care providers should pay more attention to clients/patients’ life and
provide more individualized health maintenance in an active way, such as advice on how
to maintain CD4 count at a higher level and viral load at a lower level (e.g. CDC staff or
physicians in DH Hospital), alternative sexual practices to have sex in a fun and safer way
for PLWH (e.g. physicians in CD Hospital), case management of side-effects, nutrition, and
AIDS-related complications (e.g. physicians in DH Hospital). Other potential health
institutes, such as psychiatric hospitals and TCM hospitals, should be motivated to join the
campaign against HIV/AIDS. Few PLWH are connected to psychological and mental health
services. On one hand, health care institutes should work with MSM organizations to
actively increase the awareness of the importance of psychological and mental health
among newly diagnosed HIV positive MSM. On the other hand, the CDC should build up
closer partnerships with psychiatric hospitals or clinics. For example, they can set up
projects to initiate certain free services to PLWH, especially newly diagnosed HIV positive
MSM. HIV prevention among HIV positive MSM needs to address issues of lifestyle,
self-esteem, identity, confidence and stress management. The professional measure of
cognitive behavioural therapy (intervention) can be a practical way to address these issues,
which has been practised for years and resulted in good health outcomes in Fenway
Community Health. On the other hand, newly diagnosed HIV positive MSM can be referred
to grassroots MSM organizations or HIV positive groups, where strong support from the
MSM community, especially peer groups and significant others, can be available to
facilitate them to rebuild their life.
Since these health care institutes have plenty of work in their formal services
already, their role of facilitating self-care should cooperate actively with informal health
373
service delivery systems. In Shenzhen, the cooperation between health care institutes and
grassroots organizations has accumulated some experience. However, their cooperation
needs improvement, and an urgent need is for these professionals to provide more
systematic training for peer workers and volunteers and to take an active role in
developing projects to enhance a closer link between health care institutes, grassroots
organizations/NGOs, and tongzhi websites. Through the work of peer workers and
volunteers, and specific health forums on tongzhi websites, professional health care can
be extended in a meaningful way to facilitate self-care among general MSM and HIV
positive MSM. Connecting to social support is a crucial issue. The CDC should actively
connect newly diagnosed HIV positive MSM to MSM websites, small support groups, HIV
positive groups, volunteers groups or NGOs. A practice of “health navigator” should be
adopted in the CDC system, grassroots organizations, HIV positive groups and NGOs.
Health navigators can be social workers, peer workers, health care providers, etc. The
tasks of health navigators are to link HIV positive MSM to the current resources available
in Shenzhen, such as social welfare, charitable funding, donor agencies, governmental
organizations, etc., so that a supportive environment can be built up for these HIV positive
MSM. Health promotion resources in contemporary Shenzhen, such as free condoms and
lubricants, and related materials, are not distributed to PLWH conveniently. The CDC
should distribute some condoms and lubricants to HIV positive groups to facilitate HIV
positive MSM to get access to these free materials.
In this regard, one needs to think about the collaborations between health care
institutes and MSM communities, especially HIV positive groups. Therefore a new
ground-up approach for a “healthy MSM community” should be put onto the agenda.
374
“Healthy MSM communities” as a comprehensive approach
The Ottawa Charter for Health Promotion (1986) points out that "health is created
and lived by people within the settings of their everyday life; where they learn, work, play,
and love.” Healthy settings, the settings-based approaches to health promotion, involve a
holistic and multi-disciplinary method which integrates action across risk factors. The goal
is to maximize disease prevention via a "whole system" approach. Its key principles
include community participation, partnership, empowerment and equity. The establishment
of a healthy MSM community is a specific and comprehensive approach to control the HIV
epidemic among the MSM population, which aims to empower the MSM community and
facilitate self-care among HIV positive MSM. Moreover, secondary HIV transmission
prevention should be an important component in healthy MSM community establishment,
including psychological and mental health care to HIV positive MSM, HIV positive groups
establishment, safer sex and alternative sexual skills and practices, nutrition maintenance,
oral health, anal health, relationship therapy, and health care navigation for HIV positive
MSM in need.
As presented in previous chapters, MSM circles/communities are generally
regarded as quite negative by newly diagnosed HIV positive MSM, which are commented
on as “luan”, dirty, ruined, painful, irresponsible, superficial, feigned, and lack of love and
affection. Their identities of these circles/communities are also spoiled. They generally
present with a lack of confidence or disappointment with these communities; or even
disgust or dislike for these communities. In other words, newly diagnosed HIV positive
MSM internalize the negativities of MSM circles, and weaken their collective identity and
affirmation of these MSM circles. Since negative experiences are perceived as more real,
unhealthy or deviant networks in MSM communities may occupy positions of relatively
375
high status.
Growing a healthy community is a lifelong process, which requires constant
nurturing and vigilance. A healthy MSM community is a strategy for building communities
that are capable of addressing community problems. Healthy MSM communities build trust
and relationships, and can address the problem of MSM community dysfunction. Norris
and Pittman (2000) argue that health is a byproduct of people’s adaptive lives and states
and communities working together; and medical care is just one of the many formal and
informal community resources that contribute to building a healthier community. These
resources include, but are not limited to: cultural norms that support behaviour and lifestyle
choices; education, learning, skill building, safe and adequate housing, recreation and
culture, public safety, youth mentors, volunteers, the workplace, jobs that pay a living wage,
family, non-profit organizations, health promotion and preventive services, the faith
community, media, government, and transportation. In this regard, a list of issues needs to
be addressed in order to build up a healthy MSM community.
Initiating dialogue, discussion and discourses among MSM/HIV positive MSM
Up to the end of my fieldwork, no forum or meeting had been organized in the
tongzhi/MSM community. Even though cyberspace has played an important role in MSM
community formation in Shenzhen, such as providing social spaces for communication and
information distribution, these discussions and communications are very casual, and lack
community-based in-depth thinking and debates. Therefore, it is difficult to formulate a
shared vision of what a tongzhi/MSM community should be, where to go in the future, and
how to get there. In Shenzhen, there is no specific community health centre for the
tongzhi/MSM population, and the connections or networking between different
376
community-based organizations, NGOs, health care institutes, academia, research
institutes and related authorities are largely underdeveloped. A specific health and cultural
centre for the lesbian, gay, bisexual, transgender and queer (LGBTQ) populations
functioning as a local community health and cultural creation body is therefore called for,
which can generate ground-up ideas and discourses and link the MSM community to
NGOs, academic institutes, health care institutes, and related authorities.
At this stage in Shenzhen, the cooperation of grassroots MSM organizations,
tongzhi business enterprises and donor agencies is feasible. A practice was going on in
Shenzhen that a tongzhi club obtained funding from the Global Fund to upgrade its
facilities in order to be a tongzhi centre focusing on providing recreational and gymnastic
facilities for the MSM population; and it aimed to promote a healthy lifestyle. It is an
encouraging step that grassroots MSM organizations, MSM business venues and donor
agencies can work together to change the infrastructure in an MSM community. However,
a major shortcoming is that it relies on entertainment business too much, and lacks
professionals’ participation and support. This raises another issue that academic and
political discourses on the LGBTQ population is still largely underdeveloped in China,
which is a big obstacle to negotiating social spaces and resources for these sexual
minorities. In Shenzhen tongzhi/MSM communities, the participation from scholars,
researchers or professionals (e.g. lawyers, doctors, engineers, etc.) is still very limited.
Setting up a health and cultural centre for LGBTQ populations
In Fenway Community Health (FCH), for example, they hold a monthly community
meeting where community activists, health care providers, researchers, and scholars
gather together and direct the community to think about some important issues, and
377
organize activities, such as Gay Parade or symposiums. Moreover, specific community
media, such as LGBTQ websites, newspapers and journals, provide public spaces for
open dialogues, discussions and debates and some insightful views about their community
emerge. And these LGBTQ materials are freely distributed in Fenway Community Health.
In this regard, in Shenzhen, a modern metropolis with a huge population of MSM
(estimated at about 100,000), it is feasible to set up a specific health and cultural centre for
the MSM population.
The experiences in FCH implicate that since HIV/AIDS is a priority issue and many
institutes are working on HIV/AIDS, it is possible to use resources in HIV/AIDS research
and interventions as triggers to link officers, scholars, researchers and professionals to
MSM communities, and set up a comprehensive health and culture centre for the MSM
population. And therefore an ownership for these MSM communities can be generated
among these multiple stakeholders. For example, FCH originally started as a small clinic in
Boston and in 40 years of development, it has become a comprehensive health care and
research centre with a total budget of USD50 million in 2011. And the Rainbow Clinic in CD
Hospital can be a starting point, which can act as a functional body for clinical services,
research, interventions, and community establishment. These multiple stakeholders can
obtain benefits when this centre is developing well. Tongzhi/MSM will be the most
important target population, and HIV positive MSM will be an important resource to provide
rich experiences for HIV prevention and intervention in the communities.
Fostering leadership and generating partnerships
The issue of leadership in the tongzhi/MSM community is still developing slowly in
Shenzhen. HIV prevention and intervention has been the major task among MSM
378
communities. Other aspects in tongzhi subculture building have to rely on HIV prevention
and intervention in order to look for social space for development. The discourse on
universal health equity is used to negotiate with stigma and discrimination against MSM.
The SRW as a major grassroots volunteer organization working on MSM and HIV issues
presents a kind of leadership in Shenzhen tongzhi/MSM circles. And most social activities
about HIV and MSM are organized or co-organized by the SRW and its collaborators.
However, it alone is still very weak and powerless. Another weak point of the SRW is that it
mainly carries out volunteer work in HIV prevention and its attention and capacity to
tongzhi subculture establishment is not enough. The reasons include lack of financial
resources and over emphasis on HIV/AIDS prevention and intervention. In other words,
HIV/AIDS provides resources and social space for MSM communities on one hand, and
restricts its development on the other. When a better balance of HIV/AIDS prevention and
intervention and MSM community development is addressed, an ownership among these
multiple stakeholders will be strengthened.
Moreover, the issue of leadership among the tongzhi/MSM community is not just
about the leadership of an individual or organization. Instead, what is recommended is a
type of collective leadership wherein a group of tongzhi elites, such as activists, officers,
scholars, researchers, professionals, etc. work together and push the development of
tongzhi/MSM communities. Based on the hierarchies and the top-down leadership models
in the Chinese context, the presentation of leadership should be on multiple levels, and
different stakeholders should play different leadership roles at their own levels. For
example, officers should be activated in the government, health care system included; and
scholars and researchers should play a role in the academia and related institutes. A
medical school was recently set up in Shenzhen, and it may well be possible to recruit this
institution as a new academic partner for research and clinical services among sexual
379
minorities.
Some challenges of involving multiple stakeholders, however, exist in contemporary
Shenzhen. Very few scholars and professionals actively take part in tongzhi/MSM issues,
and the collaboration between different grassroots groups or organizations is still tricky.
Especially, it is difficult for general MSM groups and HIV positive groups to work together.
The CDC and other authorities are just talking about HIV/AIDS prevention and intervention,
and avoid touching upon social development issues of MSM communities. The
partnerships between grassroots organizations, NGOs, health care institutes, academic
institutes and related authorities are largely underdeveloped.
The setup of a health and cultural centre for the LGBTQ population in Shenzhen
can motivate diverse stakeholders in tongzhi/MSM communities and related institutes and
organizations, and foster a kind of collective leadership. The Rainbow Clinic in CD Hospital
can be a functional body. CD Hospital and the Shenzhen CDC can be leaders in the health
care system since these two organizations have been working on MSM and HIV issues for
years and built up a certain degree of rapport among the MSM population; the SRW and
HPG can be leaders in MSM communities and PLWH groups; HIV/AIDS prevention and
intervention programmes can be the first step to initiate the development and in carrying
out this programmes, MSM entertainment venues and tongzhi businesses can be
motivated as well (the SRW has this experience already). Another step is to involve
professionals and academicians from both Shenzhen and Hong Kong gradually. Clinical
services, research and training can go hand in hand. Just like Fenway Community Health,
it is not only a physical body for LGBTQ health, but also a spiritual body of LGBTQ culture.
A very positive and active image of sexual minorities therefore obtains social space in
which to develop. The extended ethnography in FCH points to possibilities of leadership
380
and partnership development in LGBTQ communities in another cultural context. Now
FCH presents its leadership not only among local communities, but also nationally and
internationally. And it builds up partnerships with multiple organizations, institutes and
authorities, such as the Multicultural AIDS Coalition, Harvard Medical School, Brown
University, Massachusetts Health Department, US CDC, and US NIH. For example, it
provides training to community health centres in the US to provide better care for LGBTQ
patients, and it also successfully pushed the Department of Health and Human Services in
the US to add LGBTQ measures to national health interview surveys. A practical
implication for Shenzhen is to generate leadership within the communities, and to foster a
leadership style that emphasizes facilitation and collaboration, and encourages coalitions
and partnerships.
Cultivating role models to inform positive adaptation of the community
A shared vision of what the tongzhi/MSM community should be like, where it will go
in the future, and how to get there, are still hard to achieve in China, since the MSM
communities are still developing in their primary stage. Issues of the tongzhi community
are almost regarded as equal to HIV/AIDS issues. Tongzhi or gay, as a kind of independent
lifestyle, is still questioned, and most of them go back to heterosexual marriages when
they get older. This makes many young MSM confused and worried. It is difficult for them
to see the future as a tongzhi or gay person in China.
In this regard, tongzhi/gay role models are urgently needed among MSM
communities. Those tongzhi/gay couples or individuals who have a stable relationship or
better life state should be encouraged to come out to act as role models among these
communities. Role models include not only successful individuals or couples, but also
381
successful tongzhi organizations or enterprises. Role models should present tongzhi/gay
people as being able to have normal and achievable lives. It is not only about interpersonal
relationships, but also about collective images and responsibilities. Role models have the
power to increase the confidence in their communities, and fight against stigmas and
discriminations against MSM and HIV positive MSM especially.
Since it is generally experienced that it is difficult to look for stable partners and
lovers among MSM circles, and it is even more difficult to set up relationships with HIV
positive MSM, CBOs or NGOs should organize seminars providing knowledge and skills or
sharing experiences in relationship establishment among the tongzhi population. It is also
possible to invite professionals to give relationship therapy to facilitate these men to build
up relationships with their partners, sero-discordant partners included.
Embracing the diversity of MSM members
The MSM population is very diverse in terms of social and economic background
and they are really far from homogeneous. It is a challenge to embrace such a diverse
population. For example, the SRW had difficulties recruiting diverse volunteers, since
volunteers in the SRW generally have good education, and stable jobs and incomes, while
some volunteers of lower social economic status gradually quit this volunteer group. The
issue of social hierarchy in the MSM community is one of the barriers. Bridging the
different subgroups among the MSM population, such as HIV positive groups and general
MSM groups, is not easy. Because general MSM groups care more about having social
connectivity, while HIV positive groups pay more attention to mutual care. In this regard,
building up diverse small groups can be a practical way to deal with this difficulty of
embracing diverse members in the MSM community. Small groups are generally
382
interest-based and of small scale. It is easier to develop tailored and mutually supportive
relationships. Some respondents received strong social support from these small
supportive groups, and they became good friends.
Building strengths and addressing needs
In a healthy MSM community, it is important to identify and build on the MSM
community’s strengths and successes, and then invest in the enhancement of its civic
infrastructure. By developing infrastructure that encourages health, fewer resources will
need to be spent on “back end” services that attempt to fix the problems resulting from
weak infrastructure.
The physical strengths (assets) of the MSM community in Shenzhen include the
fact that tongzhi business is developing quite well and it could be possible to develop into
an independent economic power to back up healthy MSM community establishment;
cyberspace is highly developed and convenient; and some grassroots organizations exist
and function properly. Tongzhi business, cyberspace and grassroots organizations form
the basic infrastructure of an MSM community, which can be utilized to facilitate capacity
building and sustainability.
The cultural strengths of the MSM community in Shenzhen include the fact that
volunteerism and charity are widely accepted and practised; privacy and confidentiality are
widely accepted and have even become a norm; looking for love and hope to have lovers
or to set up stable relationships or friendships can facilitate building a comparatively stable
MSM community; a certain degree of collaboration between grassroots organizations,
tongzhi websites, health care institutes and MSM business venues already exist.
383
Volunteerism, charity, respecting privacy and confidentiality, looking for love and
relationship, and collaboration can be used to form positive norms among the MSM
population.
The strengths in the social circumstances in Shenzhen need attention as well. A
window culture encourages creation, including new approaches to HIV prevention and
intervention among the MSM population. A migrant city like Shenzhen provides more
social space for migrants to explore their expected life and identity, and therefore diverse
personal desires or interests are tolerated. And the network of “lao xiang” (fellow
townsmen) can be utilized to facilitate health education and intervention. Moreover, some
health services already exist, such as free VCT, free ART and related tests. These positive
factors can be utilized to provide more systematic training of volunteers, CDC staff and
peer workers, and to develop tailored measures to carry out HIV/AIDS prevention and
intervention among HIV positive MSM.
Creating a sense of responsibility and belonging among HIV positive MSM
As Travis Hirschi (1969) pointed out, people become bonded to society through
attachment to others, through a commitment to conformity, through involvement in
conventional activities, and through beliefs in the validity of rules and laws. In this regard,
in order to facilitate newly diagnosed HIV positive MSM to gain a sense of social belonging
and responsibility to their peers and communities, firstly, social development of MSM
communities and HIV positive groups is needed. Only when MSM communities and HIV
positive groups can provide more help and positive meaning or values, can they develop
social belonging to these communities and groups. Secondly, only when they accept
themselves as tongzhi/MSM and HIV positive, would they have the commitment to do
384
something for the communities as for themselves, such as asking for free medical services
and social insurance. Thirdly, volunteer work, entertainments or outdoor activities are
becoming conventional activities. Practically speaking, it is mutually beneficial for HIV
positive MSM to take part in volunteer work and helping others and they find relief at the
same time. Fourthly, beliefs in the validity of rules and norms in the MSM community are
big challenges, since most newly diagnosed HIV positive MSM make negative comments
about MSM communities, and they present very low confidence and trust in these
communities. In order to change these negative beliefs, the approach must start from
concrete activities in MSM community development, such as advocating self-care and
mutual care among HIV positive groups, and facilitating cooperation between general
MSM groups and HIV positive groups.
Spending resources on mental health training and grassroots organizations/NGOs’
capacity building
The implications for services and interventions include firstly, in the post-test
counselling, that the CDC and its collaborators (e.g. the SRW) need to identify those HIV
positive MSM who present more negative personalities or life attitudes, such as giving up
on themselves, feeling inferior, hopeless, depressed and lonely; and then provide more
specific social and psychological support to them. This strategy calls for advanced training
for CDC staff in counselling and observation. It is also important to improve capacity
building in grassroots organizations, such as training peer ambassadors or volunteers.
Second, there needs to be created a supportive environment for HIV positive MSM, such
as a friendly and helpful health care system, including the CDC, DH Hospital, CD Hospital
and other related health care institutes, supportive MSM communities and mutual care HIV
positive groups. Third, there needs to be provided tailored training for HIV positive MSM to
385
initiate intentional activities, which can push them to adopt a more positive lifestyle, such
as volunteer work, self-care training, stress management and experience sharing within
MSM communities or HIV positive groups.
8.5 Critiquing theories for recommended changes
Limitations of theories on health behaviour
Today, no single theory or conceptual framework dominates research or practice in
health promotion and education. However, reviews of journal articles have revealed the
most often used theories and trends in theory use, such as the health belief model (HBM),
social cognitive theory (SCT), the theory of reasoned action/the theory of planned
behaviour (TRA/TPB), and the transtheoretical model/stages of change (TTM) (Glanz &
Bishop, 2010). Most models of risky sexual behaviour in relation to HIV transmission are
based upon social/health psychology theories to predict whether or not individuals will use
condoms when having sex. HBM, SCT, TRA and diffusion theory have been identified as
frequently used theories in HIV risk behaviour change (DiClemente & Peterson, 1994).
The HBM is a value-expectancy theory and deals with the process by which
individuals assess their risk of poor health habits, assess the seriousness of the risk, weigh
the benefits of action, and grapple with barriers to action (Traube, Holloway 7 Smith, 2011).
The core constructs of the HBM include perceived susceptibility and perceived severity,
perceived benefits and perceived barriers, cues to action, and the more recent addition of
self-efficacy (Glanz & Bishop, 2010).
The TRA and its refinement of the TPB assume the most important predictor of
386
behaviour is intention (Rimer, 2002). In the TRA and TPB, attitudes and intentions are
regarded as key factors (Albarracin, Johnson, Fishbein & Muellerliele, 2001 for a review).
Behaviour intention is an individual’s attitude toward how well preventive behaviour works,
their subjective norms, or what significant others’ desires, behaviour and intention are
regarded as the immediate determinant of behaviour (Traube, Holloway & Smith, 2011).
SCT is one of the most widely used models of risky sexual behavior, with
self-efficacy being a central factor (Bandura, 2001; Wulfert, Safren, Brown & Wan, 1999;
Wulfert & Wan, 1995). SCT posits that individuals go through a cognitive process weighing
the pros and cons of practising safer sex that influences an individual’s self-efficacy, which
in turn then becomes a key factor in determining whether one will practise safer sex
(Safren et al., 2010). This theory emphasizes the importance of enhancing a person’s
behavioural capability (knowledge and skills) and self-confidence (self-efficacy) to engage
in particular health behaviour. The key SCT construct of reciprocal determinism means that
a person can be both an agent for change and a responder to change. Thus, changes in
the environment, examples of role models, and reinforcements can be used to promote
healthier behaviour (Glanz & Bishop, 2010).
The above mentioned theories of health behaviour are most widely cited in recent
literature on risky sexual behaviour with regard to HIV. These theories, to greater or lesser
extents, emphasize the cognitive pathways involved in behaviour change. These
self-efficacy models of risky behaviour regarding HIV transmission have been successfully
tested in a variety of risk groups for sexual acquisition of HIV, including heterosexually
active adults ( Wulfert & Wan, 1993), gay men (Wulfert, Wan & Backus, 1996), and
HIV-infected individuals (Wulfert, Safren, Brown, & Wan, 1999). Self-efficacy, a central
construct in health education and health behaviour research, is embodied in the
387
aforementioned theories. Self-efficacy means “one’s confidence in one’s ability to take
action” (Janz, Champion & Strecher, 2002:49). Bandura (1986) pointed out three
strategies to increase patients’ self-efficacy: (a) setting small, incremental and achievable
goals; (b) using formalized behavioural contracting to establish goals and specify rewards;
and (c) monitoring and reinforcement, including patient self-monitoring by keeping records.
Lewis (2002) developed four mechanisms to alter self-efficacy: performance enactment
(the most powerful and consistent method of altering self-efficacy), vicarious experience,
persuasion and minimizing emotional arousal.
It can be seen that these well-developed theories are based on behavioural
psychology and tend to result in interventions that focus on individual change and do not
adequately consider contextual factors that influence behaviour (Merzel & D’Afflitti, 2003).
From the above theories, promoting health behaviour needs to target intrapersonal and
interpersonal factors, such as beliefs, behaviour intention (attitude, norms and significant
others’ expectation), self-efficacy (self-confidence), behavioural capability (knowledge and
skills), and affective components.
In the current study, about the issues of psychological and mental health,
perceptions (e.g. perceived constraints of HIV/AIDS), internalized negativities (e.g.
negative attitudes and images of HIV and homosexuality), social norms (e.g. face, taboos
and filial piety), behaviour capability (e.g. limited information and knowledge) and affective
(e.g. suffering from side-effects of ART and comorbidity) have been identified as having
negative associations with respondents’ psychological and mental health state. And some
active and optimistic cognition and belief (e.g. active personalities and cultural ideology of
fate) play a positive role.
388
However, these just tell a small part of the story, since the major theme emerging
from the study was the issue of syndemic in HIV and related psycho-social and cultural
conditions. Four major social and cultural conditions associated with poor psychological
and mental health have been identified and HIV is argued to deteriorate these
psychological and mental health problems of MSM populations. Social adversities in
migrants’ lives is the first associated condition, since social adversities of long working
hours, poor living conditions, exploitation, unpleasant social encounters, lack of social
security, lack of access to social welfare, and unstable job and income have generated
huge migrant stress. Second, as an MSM they have to bear a lot of social suffering, such
as unfair treatment, social hazards, spoiled identity, self-denial and a narrower sexual
space. Third, cultural traumas are experienced when they feel their bodies have been
contaminated, since they cannot fulfil their cultural competency and success of fulfilling
obligations, exercising filial piety, and maintaining their family’s face. Last, among the
above three social cultural conditions, stigma and discrimination are their essence.
Enacted stigma occur frequently in social adversities, felt normative stigma and perceived
discrimination being quite serious in the social suffering of MSM, and internalized stigma is
the core of cultural trauma they experience. In this regard, these vivid research findings go
beyond the boundary of intrapersonal and interpersonal levels, and emphasize the strong
influence of social structural and cultural levels.
Another important and complicated issue of resilience is also hard to be explained
by the aforementioned theories of health behaviour, since resilience is not only concerned
with the individual, but also a feature of a given context (Fleming & Ledogar, 2008). The
current study situates resilience in broad social and environmental conditions of being
accepted by lovers or partners after serostatus disclosure, embracing hope when free ART
is available and more effective new ART is developed, significant interpersonal relationship
389
development in multidimensional social supports, and continuity in cultural meaning. That
is to say that when theories are taken out of context, the results may be both disappointing
and difficult to explain. In other words, these intrapersonal and interpersonal factors should
not be separated from their context (e.g. social and cultural circumstances) where they are
embedded.
Moreover, an issue of epistemology emerged that these frequently used theories of
health behaviour try to demonstrate a linear—logical and rational –causal relation between
HIV risky sexual behaviour and some intrapersonal and interpersonal factors. However,
the process and experiences of life itself are organic—that is to say nonlinear. This is the
source of an “inescapable intellectual frustration” of humans (Hawkins, 1995: 53). In this
regard, the tendency to look for a linear relation is misleading in HIV risky sexual behaviour
prevention and intervention.
In the book—Power VS Force: the hidden determinants of human behavior,
Hawkins (1995) described, one’s motive, which arises from the principles that one is
committed to, determines one’s capacity to understand and, therefore, gives significance
to one’s actions. Motivation proceeds from meaning, and meaning is an expression in
context, which determines the individual’s relative power when correspondingly aligned
with motivation. Power arises from meaning; it has to do with motive and principle; and
power is always associated with that which supports the significance of life itself. The
sources of power are invisible and intangible. Individuals of great power throughout human
history have attributed the source of the power to something greater than himself, such as
love, compassion, and forgiveness that are profoundly empowering, while revenge,
judgmentalism, and condemnation make people go weak. These complex interrelations of
motive, principles, meaning, power, context, significance of life, and actions present a
390
characteristic of nonlinearity in human behaviour and highlight some insights that are still
hidden behind these phenomena.
Adapting the syndemic theory and social ecological framework
The syndemic theory
All life processes are, in fact, nonlinear. However, linear science has grown
progressively divorced from the concern with this basis of life itself, since linear science
has no context and no paradigm of reality. “Medicine has forgotten that it is an art, and that
science is merely a tool of that art” (Hawkins, 1995: 43). The construct in health behaviour
research that there is a linear determinant relationship between single critical factors and
health behaviour is an illusion. There are no causes within the observable world. Instead, it
is a world of effects. It is necessary to identify the conditions that underlie the ostensible
causes (Hawkin, 1995). It becomes apparent that the notion that our actions are based on
thoughtful decisions is a grand illusion. The decision-making process is a function of
consciousness itself; the mind makes choices based on millions of pieces of data and their
correlations and projections, far beyond conscious comprehension, and with enormous
rapidity (Hawkins, 1995).
The nonlinearity of human behaviour can be justified by some research and
practices. Based on health psychology models of sexual risk taking, several studies have
examined the efficacy of interventions to reduce sexual transmission risky behaviour
(STRB) in individuals with HIV. Crepaz and Marks (2001) conducted a meta-analysis of the
existing 12 studies at the time and 7 of the 12 did not see a significant effect. Some of the
factors associated with stronger effects were those based on a behavioural theory, those
391
that were more intensively delivered, those that promoted and provided skills building, and
those that addressed a myriad of issues related to mental health, medication adherence,
and HIV risky behaviour (Safren et al., 2010). Obviously, these studies did not present
linear causal relationships between factors and sexual transmission risky behaviour.
Instead, they pictured multiple effects related to STRB.
Normal practices in biomedicine separate HIV/AIDS from other diseases and the
social groups and social contexts in which they are found. In the field of public health and
medical anthropology, the term syndemic has been increasingly used. Singer (1994)
coined the term to refer to the set of synergistic or intertwined and mutually enhancing
health and social problems. Diseases and conditions that comprise the syndemic are not
independent of each other; instead, they are closely intertwined and collectively enhancing.
Syndemic, a critical biocultural approach, is to identify and understand the determinant
interconnections
among
pressing
health
problems,
sufferer
and
community
understandings of the illness(es)/disease(s) in question, the relevant social, political, and
economic forces in play, and the environmental conditions that may have contributed to the
development of ill-health (Goodman & Leatherman, 2001). HIV/AIDS is strongly influenced
by a broader set of political-economic and social factors, including high rates of
unemployment, poverty, homelessness and residential overcrowding, substandard
nutrition, environmental toxins and related environmental health risks, infrastructural
deterioration and loss of quality housing stock, forced geographic mobility, family breakup
and disruption of social support networks, youth gangs and drug-related violence, and
health-care inequality (Baer, Singer & Susser, 2003). Locating the HIV epidemic in the
context of a syndemic of psychosocial risk factors underscores the existence of multiple
health disparities among gay individuals, who experience higher morbidity and barriers to
care. In addition, it places HIV risk and prevention in a broader contextual framework going
392
beyond more traditional cognitively based theoretical approaches (Mustanski, Garofalo,
Herrick & Donenberg, 2007).
Recognition of the existence of syndemics suggests the need for a biosocial
reconception of disease; rather than conceiving of diseases as discrete, boundable entities,
a more holistic approach that emphasizes interrelationships and the influence of contexts
is needed (Singer & Clair, 2003). Moreover, the analysis of syndemic spread must take into
account cultural and behavioural patterns in the social context. While syndemics reflect
social conditions and unequal social relationships, their diffusion is mediated by the beliefs
and behaviour of involved communities, and these, in turn, reflect human responses to the
life experiences of injustice and social suffering (Singer et al., 2006).
In the current study, about the issue of sexual risk, an important theme emerged
that a dynamic framework is necessary to investigate the sexual behaviour of HIV positive
MSM. For example, difficult to look for lovers or stable partners in MSM circles is the
hidden reason behind the fear of losing partners in a context of non-serostatus disclosure;
in anonymous sexual encounters, moral judgment and non-surveillance of sexual settings
provide more significant explanations of UAI; in commercial sexual encounters, economic
barriers are most significant for UAI. Moreover, sexual risk is closely intertwined and
collectively enhancing with psychological and mental health issues and health service
seeking issues. Negative emotions, mental health problems, misconceptions and risk
interpretations have been identified as intrapersonal contexts when UAI happens. Even
though health service is not presented as directly associated with UAI, it is actually an
important external context closely related to self-protection (a kind of self-care) of HIV
positive MSM. When HIV positive MSM care more about themselves, they are less likely to
practise UAI. Self-care is a manifestation of self-esteem, dignity and personal growth, and
393
well-developed volunteerism is a manifestation of social support and peer norms. A
reciprocal interaction of self-care and volunteerism is a very powerful positive factor of
safer sex. In this regard, the evaluation of risky sexual behaviour calls for a broader and
more comprehensive framework.
In line with the syndemic theory, a comprehensive model—the social ecological
model—provides a practical framework to explore the multiple and interacting
determinants of
health
behaviour,
and therefore informs
the development
of
comprehensive intervention approaches that can systematically target mechanisms of
change at several levels of influence.
The social ecological model
The social ecological model extends its concerns from bio-behavioural causes to
focusing on multiple levels of influence, especially policy and environmental interventions
which establish settings and incentives that can persist in sustaining behaviour changes,
helping to solve the problem that the effects of many individually directed interventions are
poorly maintained (Sallis, Owen & Fisher, 2008). Practically speaking, most environmental
variables and policies of interest transcend the boundary of health care systems and are
not controlled by health professionals. Changes require complicated political and social
processes. Providing individuals with motivation and skills to change their behaviour
cannot be effective if environments and policies make it difficult or impossible to choose
healthy behaviour. Instead, it is crucial to create environments and policies that make it
convenient, attractive, and economical to make healthy choices, and then motivate and
educate people about these choices. In other words, the social ecological model brings
health behaviour changes back to their social origin where they are embodied.
394
The social ecological model is criticized for its lack of specificity about the most
important hypothesized influences, and lack of information about how the broader levels of
influence operate or how variables interact across levels (Sallis, Owen & Fisher, 2008).
The ecological model provides an important framework but generally does not provide
enough detail to conceptualize adequately the relationship between multiple interventions
and multiple levels of influence that include the larger community (Glanz & Bishop, 2010).
For example, in the current study, more evidence was needed pertaining to the tongzhi/gay
friendly social environment and policy, such as legal same sex marriage and development
of MSM communities, significantly associated with healthy behaviour (e.g. condom use) in
the MSM population. However, it needs to point out that social norms and the physical
environment (e.g. infrastructure) of a community can take years to show meaningful
change, and ecological models therefore should be better used in large programmes.
Fenway Community Health is one of the successful practices in the US. It took 40 years to
build up a core centre for LGBTQ populations, wherein it incorporates comprehensive and
tailored health services, links individuals, communities, health institutes, academic
institutes, health authorities, and related governmental organizations together, and
integrates treatment, care, prevention, and health and political social movement together.
Contemporary China lags far behind the US; however, a starting point is emerging. In
Shenzhen, tongzhi business (pink industries included), tongzhi Internet networks,
grassroots organizations and groups, and NGOs have made up MSM/tongzhi communities.
And HIV/AIDS focused health campaigns and programmes have initiated collaborations
and coordination within and outside these communities. The physical environment (e.g.
infrastructure) is changing, for example, several grassroots organizations or HIV positive
groups have been built up. Social norms, such as antidiscrimination against PLWH, are
also emerging in mainstream society. Behaviour change is a process, not an event.
Sustained health behaviour change involves multiple actions and adaptations over time. It
395
has been presented in the current study that some newly diagnosed HIV positive MSM
gave up UAI at the beginning of the diagnosis; however, they relapsed to UAI later. People
do not always move through the stages of change in a linear manner; they often recycle
and repeat certain stages (e.g., individuals may relapse and go back to an earlier stage
depending on their levels of motivation and self-efficacy) (Hawkins, 1995). Initial behaviour
changes and maintaining behaviour change needs a supportive environment.
Shifting from a bio-behavioural emphasis to the social origins of HIV/AIDS
In the case of HIV/AIDS, conceptually isolating this disease from its wider health
environment has resulted in the epidemiological construction of ‘risk groups’ and ‘risk
behaviour’ which, rather than unhealthy living and working conditions, discrimination,
racism, homophobia and related issues, have become the primary focus of public health
efforts (Singer, 1994). AIDS as a disease is spreading under particular historic and political
conditions. AIDS is only one threat among many that gay men confront in a homophobic
society where gay-bashing, discrimination, battles over gay rights or total ignorance of their
existence are commonplace, and gay men may be dealing simultaneously with issues
such as self-esteem, alienation, social identity, and family problems (Hays & Peterson,
1994). In the current study, a fast growing economy, stressful migrant lives, a rural-urban
dualism, a shifting political situation and an unsophisticated health care system have
formed a specific historic and socio-political condition in contemporary Shenzhen where
the MSM population encounters the HIV epidemic.
Moreover, low self-esteem, multiple hierarchies, internal stigma and discriminations,
internal negative attitudes, social identities struggling, and family obligations are generally
experienced by HIV positive MSM. In this regard, various social concerns are highly
396
motivating for MSM and a social focus should be adopted as a central theme. HIV/AIDS is
not just the straightforward result of a pathogen or physiological disturbance caused by a
virus; instead, a variety of social problems such as stigma and discrimination against MSM,
economic insecurity, life stress, occupational risks, substandard housing, and political
powerlessness contribute to susceptibility to HIV/AIDS. The undemocratic nature of the
AIDS epidemic is not the inevitable result of an encounter with infectious disease; rather it
is the unfortunate but inevitable result of the encounter with morbid social conditions and
oppressive social relations (Singer, 1994). The non-random risk of HIV infection is actually
a rational response to social disparity, which is conditioned by socioeconomic factors that
press participants to focus on short-term pleasure, and emotional and material gains rather
than on long-term planning and monogamous partnerships (Singer et al., 2006). In the
current study, all HIV positive MSM were coincidentally migrants. Moreover, from their
perspective, rural-urban dualism (Hukou system), tough migrant life, identity struggling,
economic hardship, social and community hierarchies, and negative image and values of
MSM communities (e.g. focusing on money and handsome faces) were all presented as
the important social and cultural environments they inhabited.
Byron Good (1994:53) emphasizes, “Disease is not an entity but an explanatory
model”. And this explanatory model of HIV/AIDS relies more on its social origins, instead of
its immutable physical reality. Social factors, like poverty, stigmatization, racism, sexism,
ostracism, and structural violence may be of far greater importance than the nature of
pathogens or the bodily systems they infect (Farmer, 2003; Parker, 2002; Paker &
Aggleton, 2003). Farmer (1999) points out the necessity of assessing how social forces,
such as structural violence (e.g. poverty, stigmatization and discrimination) and oppressive
social relationships, come to be embodied and expressed as individual pathology. In this
regard, promoting health behaviour should target social forces as much as individual
397
factors, and these two types of factors should never be separated. To prevent a syndemic,
one must not only prevent or control each disease and its related conditions but also the
force that ties those diseases and conditions together (Singer & Clair, 2003).
AIDS has become a metaphor for understanding society, which has exposed the
hidden vulnerabilities in the human condition and the nature and consequences of social
inequality within and between nations and groups in the contemporary world (Sontag,
1990). AIDS has revealed itself as a disease of social relationships, a disease of society,
as it is comprises a markedly stratified and widely oppressive structure. In the US, the
greatest risk factors for AIDS are identified as being poor and being an oppressed ethnic
minority (in China, based on the current study, being a member of sexual minorities and
having migrant status are also the significant risk factors); notably these are not
behavioural factors of the sort that commonly are linked to AIDS, but are reflections of the
health effects of the reigning structures of social inequality. It is those who have the least
power in society or are otherwise subject to social opprobrium and public disparagement
who are the most likely to be infected (Baer, Singer & Susser, 2003). Farmer (1999)
pointed out that social inequalities are the most well demonstrated co-factors facilitating
the spread of HIV and structuring the outcomes of HIV infection.
In the current study, social inequalities emerged as crucial reasons for the
ineffective response to the HIV epidemic. Social inequalities against migrants, sexual
minorities and PLWH are presented clearly in this study. On the issue of health services,
asymmetric power relationships between health care providers and HIV positive MSM,
presented as controlling the MSM population by force and distributing very limited funding
to MSM communities, implicate a top-down management system that focuses on
controlling instead of developing and empowering MSM communities. This is an unequal
398
social condition that prohibits effective responses to the HIV epidemic. A social order of
top-down dualism, intertwined with diverse and multiple “guan xi” (关系 connection and
relation) and “ren qing” (人情 favour), is a characteristic of traditional Chinese society.
When this cultural trait works in health care systems, it presents as doctor domination and
patient submission, while a concept and idea of services are generally absent. In the
aspect of health care service delivery, Chinese cultural elements of “guan xi” and “ren qing”
exercise significant influences, especially when related health resources are limited. Guan
xi practice is often used as an alternative path to formal bureaucratic processes and
procedures, a shortcut around, or a coping strategy for dealing with bureaucratic power
(Yang, 1994). Renqing (favour), lian (face, moral position), and mianzi (face as
self-affirming social status) are moral resources, which endow social conditions, and
success and failure depend on the deployment of moral capital to mobilize networks and
foster their effects (Kleinman & Kleinman, 1997). Those migrant HIV positive MSM who
cannot meet the criteria of having free ART in Shenzhen have to try different “guan xi” and
“ren qing” in order to get access to the limited health resources. Chinese generally prefer
to look for health care in an informal way, such as looking for health care through diverse
“guan xi” of relatives, friends, classmates, colleagues, lao xiang (fellow townsmen),
acquaintances, etc. This cultural practice in turn reinforces top-down dualism.
Heterosexual hegemony is a huge source of social inequality, which exercises its
power in discursive ways. In Chinese culture, a true adult is connected to others and to
take up one’s obligations (e.g. familial obligations of marriage and procreating children),
and failure to do so is to be less than human (Fei, 1992). Heterosexual marriage is still
regarded as a cultural imperative, since it legitimizes procreation and maintains the
bloodline of lineage. Majority domination is another characteristic in Chinese culture, which
Li (2006) described as “da gailv daodeguan” (大概率道德观 large-probability-morality).
399
Chinese people usually regard more common behaviour as being in accordance with
morality while they understand less frequent behaviour as abnormal and unethical, which
presents the underdevelopment of personal consciousness among Chinese. In these
social and cultural circumstances, sexual minorities, MSM/homosexual men included,
cannot enjoy legitimated freedom in deciding their own sexual orientation and sexual
pleasures, which is an important component of a civilized and democratic society
(Richardson & Turner, 2001). Having no cultural legitimacy, MSM generally find it difficult to
look for lovers or stable partners to form a comparatively stable couple relationship. This is
the social origin of the inequality and suffering that MSM experience. An HIV positive
diagnosis further exacerbates their suffering and inequality. Contaminated bodies cannot
fulfil cultural obligations in maintaining face, fulfilling filial piety and managing taboo, so a
certain degree of cultural trauma is therefore generated. Another expression of social
inequality presented is social hierarchy among MSM communities based on different social
economic status, outlook, health status, etc. A contemporary social consciousness of
“civility and quality (sushi)” stigmatizes rural-urban migrants and therefore strengthens the
sexual hierarchy among the MSM population (Jones, 2007). In contemporary China,
citizenship has been put on the agenda and rural-urban dualism has been reformed. The
government has issued regulations forbidding combining social welfare and related social
services to Hukou. It is therefore a good time to strive for sexual citizenship and social
consciousness under this political trend.
8.6 Limitations of the study
This was a qualitative study with mixed sampling strategies, such as key informant
interviews in a convenience sampling, purposive sampling based on the research
framework, and theoretical sampling in UAI and MB. While efforts were made to ensure the
400
representativeness of the sample (e.g. recruiting different types of newly diagnosed HIV
positive MSM based on different occupations, education levels, income levels, ages,
household registration, etc.), the sample may or may not be representative of newly
diagnosed HIV positive MSM in Shenzhen. It has been introduced that some newly
diagnosed HIV positive MSM give up on themselves and do not contact health care
workers or volunteers. But in the current study, we failed to recruit this type of respondent.
Therefore it was difficult to explore in-depth the reasons why they do so. Among 45
respondents, four of them did not meet the criteria for clinically newly diagnosed HIV
positive MSM. But because of their importance and specificities in some aspects of this
study, their data were still used when necessary. However, these four cases might
increase the risk of inconsistencies from an epidemiological perspective.
The reality of the fieldwork is another limitation. The SRW was the cooperator in the
current study and allowed me to get into the MSM communities in Shenzhen. However, the
SRW had its limitations as well. Since other HIV positive groups were not all close to the
SRW, and some of them even had tricky relationships with the SRW, they therefore were
not open, or not totally open to a researcher like me who was close to the SRW. As a result,
some obstacles had not been removed by the time I tried to go deep into the groups of HIV
positive MSM. This situation prohibited from conducting participatory observations in some
HIV positive groups. Among 45 respondents, 12 of them were recruited in participatory
observation, 11 of them in general observation on an occasional basis, and others were
not recruited in observation. In this regard, the data based on observation might not
provide the whole picture.
An edict of qualitative research is to collect data until saturation occurs and richness
of the data is derived from detailed description, not the number of times something is
401
stated (Morse, 1995). Data saturation is related to a list of factors, such as sample size,
scope of the study and the nature of the topic. The current study recruited 45 HIV positive
MSM (41 of them were clinically diagnosed and 32 of them were interviewed repeatedly).
The sample size was larger than the median and mean, while it was still within the range
[for details please see Mason (2010): the median and mean were 28 and 31 respectively,
the most common sample sizes were 20 to 30, and the guideline of sample size was no
less than 15 but under 50]. Even though sample size is an important factor related to data
saturation, other factors also need consideration. The scope of the study is such a factor.
The current study covered a large scope, exploring newly diagnosed HIV positive MSM’s
adaptation process in psychological and mental health, sexual risk and health service
seeking. A life history-based interview style was adopted in order to make sure themes
emerged from the data naturally. The consistency of data could be one problem, since
different respondents had different focuses on their life histories and life profiles. It is
possible that some points may not have been explored in enough depth. These data
explored the life histories and adaptation processes of these newly diagnosed HIV positive
MSM. But in the in-depth interview process, the questions were not asked in precisely the
same way to all men. It may influence the actual adherence of these data in some sense.
The nature of the topic was very sensitive, since it tackled how HIV positive MSM practise
unprotected sex with their partners. The respondents felt awkward when talking about this,
so it might be possible that some respondents did not report unprotected sex or reported
less of this behaviour in the interviews (reporting bias). It is not possible to determine
whether what the respondents described was actively used during partner selection or
functioned more as post-hoc rationales used to either second guess or feel better about
engaging in unprotected sex. With this caveat in mind, it is still useful to examine the
statements made by men “after the fact”, as research on risk perception shows that
post-hoc rationalizations can become predictors of future engagement in risky behaviour
402
(Halpern-Felsher et al., 2001).
Data inconsistency was a potential problem in the current study. Generally,
respondents had a better cooperation and presented as more comfortable in the second
interview and they provided more information that they had not in the first interview, but a
few respondents (e.g. Zhou and Shi) were less willing to cooperate and appeared bored in
the second interview. Shi said he had sex with a male before diagnosis in the first interview,
but he said he did not at the beginning of the second interview, and later he gradually
talked about his affair with a man and he had consensual anal intercourse with this man
after his diagnosis. It seems inconsistent; however, based on a total consideration of his
life history, his friends network, and his attitudes to sex with males, and interactions
between him and me, I realized that at the beginning of the second interview, some of my
words or tone might have made him uncomfortable so that he denied his previous sexual
behaviour with men, but later after I paid more attention to my language, eye contact, and
tone, he then felt better. Zhou is another case in which I encountered role conflict. Zhou’s
story was very sad; I gradually had deep sympathy for him, which influenced my words and
tone unconsciously. This was an important reason that made him uncomfortable, since he
was put in a negative position of inferiority and helplessness. Later I realized this problem,
and changed my sympathy to empathy, and looked at him with a positive view. These
cases show that some degree of inconsistency may exist in the data, which may increase
its incredibility. Inconsistency also presented in participant observation. For example, how
do CDC staff talk to diagnosed HIV positive MSM? My participant observation was not
enough, since the CDC was not our research cooperator in the current study, and I did not
get access to their working process. I only had a chance to go with a respondent to the
CDC office for the CD4 count test. What I rely on is integrated considerations of my
observations, respondents’ reports and CDC staff’s interviews and group discussions.
403
Even though the total units of observation can reach the range of 100-200, consistency is
still a problem, since I just lived together with two newly diagnosed HIV positive MSM in
this nine months of fieldwork in two places. It is impossible for me to follow up other
respondents. In total 12/45 respondents let me take part in their daily life under informed
consent, while other respondents did not. It therefore became a shortcoming of my study.
The participant observation in gay bars and tongzhi saunas also encountered difficulties,
since it is too noisy to talk in gay bars while too quiet in tongzhi saunas so that it is
inappropriate to talk in these settings.
China is very big and MSM communities are heterogeneous in different cities.
Shenzhen is a young and migrant city and its specificity might not be appropriate for
generalization to other cities, even though an argument appears that “improved
understanding of complex human issues is more important than generalizability of results”
in qualitative studies (Marshall, 1996). Furthermore, despite our carefully designed
sampling strategy which was intended to maximize the diversity in our sample, the
relatively small sample size (n=45 in HIV positive MSM, n=20 in health care providers,
n=16 in volunteers) may caution against generalizing too broadly or strongly about the
patterns observed in this study. MSM and MB are closely related but also presented
differences. In order to have a comprehensive view of HIV positive MSM in Shenzhen, MB
were also recruited in the current study, but only a limited number of HIV positive MB were
recruited and they were only interviewed once. It may be difficult to come up with an MB
specific theoretical argument or theory development.
Personal limitations might be sources of bias as well. When I interviewed Lv who
was referred to me by the SRW, I was really attracted by his stories and experiences. I saw
that his case very closely matched the major themes in the current study. I therefore
404
ignored a detailed information that he said he was “que ren” (确认 recognized) HIV
positive in CD Hospital, but only the Shenzhen CDC can diagnose an HIV case. The term
“que ren” Lv used was not the term “que zhen” (确诊 diagnosed). It was in a later
discussion with my supervisors that we found out that he had not been clinically diagnosed
HIV positive. The “que ren” Lv mentioned in CD Hospital was actually a screening test.
Going back to his transcription, I found that Lv took two screening tests in CD Hospital, and
the first was uncertain, while the second was positive.
A list of limitations has been identified in the current study. However, given the
recent epidemic regarding increased sexual transmission of HIV among the MSM
population in China, a study of newly diagnosed HIV positive MSM is timely.
8.7 Conclusion
This ethnographic study adopts multiple research methods to explore the social and
cultural circumstances where newly diagnosed HIV positive MSM live, and the adaptation
processes that newly diagnosed HIV positive MSM experienced generally. Through the
lens of social ecology, cognition, affect and action, secondary HIV transmission among
newly diagnosed HIV positive MSM, especially UAI, was investigated comprehensively in
terms of psychological and mental health, sexual risk and health service seeking.
This study has focused on ways in which newly diagnosed HIV positive MSM
generally experience a certain degree of psychological or mental problems, and these
problems are not only related to HIV, but also associated with specific psycho-social and
cultural conditions in contemporary China, such as social adversity in migrants’ lives,
social suffering as MSM, cultural trauma of being HIV positive, stigma and discrimination
405
against HIV and MSM. A syndemic of HIV and specific psycho-social and cultural
conditions therefore emerged. The meaning behind this syndemic has its social origins in
HIV/AIDS, which means that social conditions (e.g. structural violence and oppressive
social relationships) come to be embodied and expressed as individual pathologies of
HIV/AIDS. The health service is another important context for the ineffective response to
the HIV epidemic, even though a direct relation between UAI and health service seeking is
not presented.
The current top-down approach in health service emphasizes control instead of
empowerment. Health care providers also encounter lists of problems that reduce effective
responses to HIV/AIDS prevention and intervention. Even though most newly diagnosed
HIV positive MSM reported giving up practising UAI after the diagnosis, UAI still happened
occasionally, and negative emotions or mental health problems, and/or misconceptions
and interpretations of risk form an important intrapersonal context of the occurrences of
UAI. Moreover, partner types interact with different social and cultural conditions, such as it
being difficult to look for lovers/partners, non-surveillance sexual setting, moral judgment,
and lower social-economic status, and influence the practices of UAI. In contemporary
Shenzhen, very limited efforts are being made to change these psycho-social and cultural
conditions that interact synergistically and contribute to increasing the severity of the
HIV/AIDS epidemic. If these conditions are not removed, UAI will not stop. In this regard,
HIV prevalence among the MSM population in Shenzhen will still increase, even though
the rate will slow down.
Risky sexual behavior, especially in the form of UAI, should be investigated in the
interactions between individual factors, contextual factors and intentional activities. Some
factors play positive roles. Human resiliency (e.g. active and optimistic cognition and
406
emotion) is a crucial factor when dealing with psychological and mental health problems.
Spirituality is an important characteristic of positive factors in managing sexual risk, such
as self-protection, altruism, love, self-help, volunteerism, self-esteem, dignity and personal
growth. Factors of free services, good collaboration, and positive attitudes (e.g. sense of
importance and achievement, perceived real benefit or effectiveness) play positive roles in
health service seeking. Some factors, such as self-care (e.g. intentional activities),
reciprocity (e.g. volunteer work, self-help and helping others), and relationship
development and maintenance, are influential not only in psychological and mental health
problems, but also in sexual risk management and health service seeking. In this regard,
HIV prevention and intervention among HIV positive MSM is still hopeful when positive
factors are strengthened, while negative factors are prohibited or removed. New HIV
prevention approaches are therefore emerging to facilitate self-care as a key to positive life
adaptation and to build up a healthy MSM community as a comprehensive approach.
This is a prior ethnographic study among newly diagnosed HIV positive MSM in
China. Shenzhen, the first city where HIV prevalence among the MSM population
presented a trend of stabilizing, is meaningfully investigated as a case study in China. The
adoption of ethnography provides comprehensive and detailed information through an
insider’s perspective about the social, cultural and political circumstances, health care
system, and adaptation processes after HIV diagnosis. Life history was emphasized in
every respondent (newly diagnosed HIV positive MSM), so that related themes emerge
naturally, instead of being man-made. Based on this robust research technique, both the
positive and negative factors associated with secondary HIV transmission (e.g. UAI) are
equally evaluated. Moreover, based on an insider’s view, the interpretation of these data
can be more accurate and insightful. This study therefore can situate a concrete sexual
behaviour of UAI into a vivid context of contemporary Shenzhen, and HIV transmission is
407
therefore extended from a risky behaviour to its much broader and meaningful social
origins. Through this process, possibilities of successful prevention and intervention in
both individual and environmental factors are therefore explored. It goes beyond a
dominant approach of biomedical and behavioural prevention and intervention in
contemporary China, and highlights the necessity and importance of dealing with social
origins or social forces of the HIV/AIDS epidemic. A syndemic of HIV and its related
psycho-social and cultural conditions asks for a “cocktail” of prevention and intervention
measures at multiple social ecological levels.
Culturally competent and socially effective strategies of HIV/AIDS prevention and
intervention among newly diagnosed HIV positive MSM are therefore made possible. Last
but not least, this study also contributes to interdisciplinary theory development in public
health. The research framework that this study adopted is based on interdisciplinary
theories and concepts, including social ecological model, cognition, affection, and action,
and covering multiple factors at individual level, contextual level, and intentional activities.
Through this study, linear processes between factors and risk behaviour have been
testified as illusions, and a natural characteristic of nonlinearity of human behaviour has
been highlighted, and therefore asks for a comprehensive approach to investigate health
behaviour that starts from individual cognition, affection and action and then extends to
broader psycho-social and cultural conditions where such health behaviour is embedded.
Efforts to enhance both individual and contextual factors must go hand in hand in order to
have effective and sustainable improvement in health behaviour (e.g. safer sex).
408
Appendix
Appendix I: Interview and observation Guideline
To you knowledge, how do people call those who are HIV+? What terms do they use? How
do you feel about these terminologies?
Among HIV+ people, how do they call each other generally? (PLWA=\=感染者？)
Part 1: Background information of the MSM communities, HIV+ MSM network, health care
settings or related authorities
1.1 NGOs and volunteer groups (Rainbow 258 as an example):
a. the structure of the organization;
b. the services and activities of the organization;
c. the relationship between the organization and the local government or authorities;
d. the location and the outreach distance of the organization
e. the education level, the income level, and the peer relationships of its members
f. the mission of the organization
1.2 HIV+ MSM network (QQ group as an example)
a. the set up of a QQ group and how does it recruit members
b. what do they discuss in the QQ group
c. what activities do they organize in their real daily life
d. what do their concern in their discussion
e. the world view or belief of the members
f. the social economical and educational status of the members
1.3 Shenzhen CDC system and other related health care institutes (like DH Hospital)
a. the works or services of CDC that are related to MSM, such as VCT
b. the process of treatment provided to HIV+ MSM in DH hospital
c. the information or knowledge of HIV/AIDS provided by CDC and hospitals
d. national policies and local regulations related to HIV and MSM
e. the relationship between CDC and other related health care institutes
Part 2: Life history of HIV+ MSM
2.1 Personal data
a. age, education, job and income, marital status, religious belief, social status or
involvement in social groups or social activities
409
b. family members, and social support system, such as friends and peers
c. how do you make a living?
2.2 migrant experiences
a. place of birth and early life
b. history and patterns of migration\migrant route (working and living experiences in the
cities)
c. number of years of residence in Shenzhen, and type of residence
d. differences between registered permanent Shenzhen residence and not registered
permanent Shenzhen residence
f. language use and proficiency,
g, social contacts or relationships (ethnicity of close friends, spouse, neighbours)
h. cultural participation (dietary choices, media preferences, religious participation)
i. sense of belonging
j. lower socio-economic status and limited power in the new society
k. limited social capital (disruption of their old social and family system, and have limited
access to social organizations and services in the new society) and bi-directional
interaction of cultural norms (continue to retain their cultural norms or experience cultural
losses without acquiring the cultural values of the new society
geographical-cultural-time-context)
l. individual-level factors—stressors, depleted psychosocial resources, loose of cultural
beliefs (loss of orientation, sense of meaninglessness, lack of purpose, and emptiness),
and low use of health services
m. working experiences (working hours, relations with colleagues in companies\work
places, salary, )
n. as a migrant\floating population, what is important to you?
2.3 experiences of being MSM
a. the social network of MSM and social relationships among MSM
(a) do you have some friends among MSM group?
(b) how do you get around with those friends?
(c) what kinds of social activities do you have with those friends?
b. the life of MSM, in terms of sexual and emotional experiences:
(a) how do you have sex? (1 or 0, 69, oral?)
(b) with whom and in what circumstances?
(c) how do you feel? (sex as a strategy to overcome stress?)
(d) do you use condom and lubricant?
(e) Why or why not?
410
(f) What kinds of condom and lubricant?
(g) what kind of things make you feel sexy?
(h) does HIV+ affect your feeling of sexy body?
c. sexual relationships of MSM: emotional or economical, regular or irregular,
monogamous or polygamous?
d. do you use drug or when you are in a sexual encounter? What kind of drug it is? How do
you feel? why do you use this drug? What are the differences of these drugs?
f. could you please give a overall comment about your sexual life and sexual satisfaction
after you got HIV+?
g. what is important to you as a men who have sex with men?
2.4 knowledge and belief about HIV/AIDS
a. what is in your mind at once when I talk about HIV/AIDS to you? please describe it.
Based on your experiences, how do people in general look at HIV/AIDS and PLA?
b. what do you think of the cause of getting HIV+?
And why do some people get infected, while others do not?
c. what should you do after getting infected? (such as VCT? CD4 test? Or alternative
treatment? Special food?)
d. what treatment is available now? And please explain this treatment based on you
understanding?
e. Is there any side-effect of these treatment and how can you manage it?
2.5 medical information and health seeking behavior (VCT CD4) (expectations,
experiences, and satisfactions)
a. have you taken medication? What medicine and how to have? (i.e. compliance and drug
resistance)
b. except medication, what else should you do?
c. where do you obtain these medical information?
d. what services related to HIV/AIDS have you had in Shenzhen?
f. do you have experiences of VCT or CD4 test? Please describe it.
g. in terms of VCT, why do you have VCT? Please describe the process of VCT you had
before? How do you feel about VCT (helpful or not, comfortable or not? any problems? Any
suggestion?)?
h. in terms of CD4, why do you have CD4 test? Please describe the process of CD4 test
you had before? How do you feel about this test (helpful or not, comfortable or not? any
problems? Any suggestion?)?
i. do you have friends who are HIV/AIDS health care providers? What is your opinions
about these HIV health workers? Based on your own experiences, how do they look at you?
411
could you please provide your own example?
j. what is your expectations of these health services (i.g. VCT and CD4 test)?
k. what aspects of these services satisfy you and what do not satisfy you?
l. how do the test result have been communicated? How do the consultant discuss the
result with you (sufficient or insufficient discussion)?
m. process-based research: what is the service? Its strengths and weaknesses, how
clients are brought into the services, how they then progress through it, nad the
interactions between staff and clients.
n. what dispose you to decide to have an HIV test at a particular time (decision-making
process)? The reasons for having or not having a test or returning or not returning for the
result?
o. process of accessing HIV testing: accessible, appropriate, alternative testing site
p. who give the test result to clients? Who do the pre-test counselling? Who do the
post-test counseling? How do you feel this counseling structures and arrangements?
q. what do you feel or what do you do between the time of giving a blood sample to the
time of getting the result, when you are normally in a extremely stressful status? And how
long do you need to wait for the result?
2.6 adaptation of getting HIV+
a. how do you feel when you were told that you were HIV+? (emotional aspect—anger,
stress, fear, indifference, self-esteem?)
b. please describe your feeling about yourself since you got infected. And how has the
feeling changed over time?
c. what did you do after knowing that you got infected? (i.e. planning for future)
d. what do you think is the most worrisome aspect of getting HIV+ for you?
e. Does HIV+ affect your life? In what way? And how can you handle it?
f. what were the reactions from your family, relatives, sexual partners, friends, peers,
colleagues and neighbors after the disclosure of your seropositive status? And how have
your relationships with these people changed?
g. what was your reactions? How have you tried to adjust yourself in relation to others?
(dimensions: having meal, sleeping, drinking, going to the temple, joining social activities,
social feasts)
h. what do you think will others look at you?
i. what do you think will others like you to do?
j. what do you need/desire?(i.g. sex, daily life, emotion, relationship, reproduction, family,
etc)
k. what is the cause of your getting infected?
412
Part 3: Guideline for stakeholders (i.e. health personnel, NGO staff, peer volunteers)
a. observation on the physician-patient interaction during the health service process in
terms of discrimination against patients and communication problems
b. stakeholders’ knowledge about HIV/AIDS
c. their general ideas of MSM and PLWH,
d. the content of their services related to HIV and newly diagnosed MSM,
e. attitudes towards their own work, including reciprocity and trust with MSM,
f. the difficulties they meet when working with HIV positive MSM,
g. their perceived role and responsibility in their work related to HIV and MSM,
h. their observations about the process of adaptation among newly HIV positive MSM,
i. their perception of others’ attitude to them relating to their work with HIV positive MSM.
j. how do the test result have been communicated? How do the consultant discuss the
result with you (sufficient or insufficient discussion)?
k. what counselors perceive the aims and objectives of their HIV counseling practices to be?
And what their experiences and expectations of the HIV counseling process are?
l. based on your experiences, what should be provided in the pre-test discussion and
post-test discussion, what are the differences of pre and post-test discussion (brief,
focused and effective discussion or not, how many minutes)?
m. as a health care providers (e.g. counsellors), what are your aims or objectives in
providing services?
n. who give the test result to clients? Who do the pre-test counselling? Who do the
post-test counseling?
o. as a health care provider, what do you think should do for the clients between the time of
giving a blood sample to the time of getting the result, when clients are normally in a
extremely stressful status?
413
Appendix II: Shenzhen CDC Focus Group Guide (April 25, 2010)
First, general ideas
1.
2.
3.
your general ideas of HIV+MSM (印象，想法，观察)
在你看来，他们需要什么？
你们跟 HIV+MSM 人群打交道，你们跟他们的关系如何？你对他们的态度前后有什么变
化吗？（reciprocity & trust）
4.
你对你自己所从事的防艾工作有什么想法吗（你是否满意，是否有来自社会朋友同事家
人等方面的压力，是否给你带来不便或者负面影响，有积极影响吗）
5.
因为你从事艾滋病与 MSM 人群的工作，其他人对你有什么想法或者态度吗？
6.
你是否感觉自己在 HIV MSM 有关的工作中有某种责任或者扮演某种角色？
Second, specific works
1.
在 MSM 人群方面，你们具体的工作内容有什么？（services—testing, counseling，
training, workshop, community building）
2.
在工作中遇到什么困难了吗？（e.g. 与其他部门机构打交道，与社区）
3.
在你看来，做 VCT 目的是什么？应该怎样做？希望达到什么效果？
4.
检测前咨询，谁来做，谈些什么内容，希望有什么效果
5.
检测的结果具体是怎样告知 MSM 人群的？（communication ways，e.g.你的血液有点
问题。
。。血样出错了。。
。你过来就知道了。。
。）
6.
检测后咨询，谁来做，谈些什么内容，希望有什么效果 （sufficient discussion or not）
7.
What are the differences of pre and post-test discussion (brief, focused and effective
discussion or not, how many minutes)?
8.
在你看来，现在深圳的 VCT 在防艾工作中起到什么样的效果？（双刃剑？）
Third, related issues
1.
有关 HIV+MSM 的相关政策法规有哪些？资金来源（地方财政，中央统筹，慈善机构）？
实际操作？
2.
在针对 HIV+MSM 人群的防艾工作中，有什么策略？（如何发动 MSM 及其社区的积极
性？）[CDC+258+university/professionals? to develop training for volunteers to take the
role of counselor?] appropriate financial support + stimulate the passion among msm
community + HIV positive peer educators
3.
需要哪些方面的合作，协助，或者帮助（政府，非政府，学术机构之间）
4.
在 MSM 人群的防艾工作中，疾控中心，东湖医院，慢病院之间发挥着怎样的角色？
5.
草根组织中，如 258 是以同志为主要认同的（里面都是同志，但是有的感染了，有的没
有感染），A+A 是以感染者为主要认同的（里面都是感染者，但是有的是同志，有的不是同
志），在你看来，这两种草根组织的区别在哪里？各种在防艾工作中的角色有什么不同？
414
Appendix III: SRW Volunteer Focus Group Discussion Guide (April 4, 2010)
Part one Volunteer works
What’s your general impression and experiences?
What are your reasons of taking volunteer works?
What do you lost or gain in these volunteer works?
What differences do you experiences after taking volunteer works?
What are your attitudes to your volunteer works?
What do you perceive others’ attitudes to you when you took part in volunteer works?
Part two conditions for volunteer works
What knowledge (related to HIV/AIDS) do you think is needed in volunteer works?
What are your understanding and ideas about PLWH?
What is your observation to PLWH?
What do you think PLWH need? What problems do PLWH face? What are the resources
and strategies to deal with these problems? What services are needed?
Part three VCT
What do you think about pre-test counseling?
What do you think about post-test counseling?
How to follow up HIV positive MSM?
How to follow up AIDS patients?
How to improve VCT?
Part four Issue of volunteer works
When HIV negative volunteers work with HIV positive volunteers, is there any problem? If
so, how to face it?
When HIV negative volunteers take part in the work of caring HIV positive MSM, what do
you think need attention? How to carry it out?
Volunteers are very diverse in terms of different income, education, out looking, and so on?
How to make them work together?
Part Five Experiences from volunteers
Do you have any changes in your won sexual behavior after taking part in volunteer
works?
Do you think there’s any effect on you after taking volunteer works of hotline services? Do
you receive any related training? If so, what training is it?
Do you want to continue volunteer works? What is your thinking?
415
Appendix IV: Ethical approval
416
Appendix V: Inform consent form for in-depth interview
中国 HIV 新感染者二代传播问题的初步定性研究 访谈知情同意书
亲爱的朋友：
您好！我是香港中文大学公共卫生及基层医疗学院的博士生。我的名字叫李浩初。我们现在
正在开展关于中国 HIV 新感染者的适应与二代传播的定性研究。该研究的目的在于了解新感
染者在证实感染艾滋病后的适应过程以及相关的生活经历。
我们诚心邀请您参加这个研究，接受访谈。访谈内容包括您感染 HIV 前后的生活经历，想法，
体会，感觉等等，我们的访谈也会谈到有关性经验性行为方面的话题。
访谈时间为 1.5-2 小时，如果您同意，我们将采用录音。录音资料和访谈记录会被严格保密，
并且只会用于学术用途。我们也只会使用化名。作为车马费，在访谈完成后我们会支付您 200
元人民币(第二次访谈 300 元)。
参与本研究纯属自愿性质，在整个研究过程，如果您觉得不想再参与，您可以选择随时退出。
您的理解和配合非常重要，将有助于表达感染者的心声，让社会了解到 HIV 新感染者的真实
生活以及面临的问题，从而为关怀感染者以及控制艾滋病提供重要的依据。
再次诚恳邀请您接受我们的访谈！同意接受访谈就请在以下签名：
签名：
日期：
万分感谢您接受我们的邀请！
香港中文大学公共卫生及基层医疗学院
417
Appendix VI: Inform consent form for participant observation
中国 HIV 新感染者二代传播问题的初步定性研究 参与观察知情同意书
亲爱的朋友：
您好！我是香港中文大学公共卫生及基层医疗学院的博士生。我的名字叫李浩初。我们现在
正在开展关于中国 HIV 新感染者的适应与二代传播的定性研究。该研究的目的在于了解新感
染者在证实感染艾滋病后的适应过程以及相关的生活经历。
我们的研究包括访谈和参与观察两部分。现在我们诚心邀请您参加我们第二阶段研究—参与
观察。这个部分的研究是要记录您的日常生活的多方面的信息，包括您的社交网络，您的日
常生活，您要面对的问题，以及您的想法，体会，感觉等等，我们也会谈到有关性经验性行
为方面的话题。
我们将会不定时与您接触，从而了解您的生活并作记录。这些记录会被严格保密，并且只会
用于学术用途。我们也只会使用化名。
参与本研究纯属自愿性质，在整个研究过程，如果您觉得不想再参与，您可以选择随时退出。
您的理解和配合非常重要，将有助于表达感染者的心声，让社会了解到 HIV 新感染者的真实
生活以及面临的问题，从而为关怀感染者以及控制艾滋病提供重要的依据。
再次诚恳邀请您接受我们的访谈！同意接受访谈就请在以下签名：
签名：
日期：
万分感谢您接受我们的邀请！
香港中文大学公共卫生及基层医疗学院
418
Appendix VII: the HIV Case Follow-up Form
个案随访表
卡片编号： 随访状态：□随访(第____次) □失访（此次随访结束） □
查无此人（以后无需随访）
(患儿家长姓名：
患者姓名：
)
身份证号：□□□□□□□□□□□□□□□□□□
性别：□男
□女
联系电话：
现住地址(详填)： ________ 省 ________市 ________ 县________ 乡(镇、街道)__________
村______(门牌号)
是否已死亡： □是（死亡日期： _________年_____月_____日）
□否（跳
至下一栏） 死亡时病程阶段： □艾滋病病毒感染者
主要死因：
□艾滋病
□艾滋病病人
□自杀
□吸毒过量
□其他
(请注明)
（死亡个案随访到此结束）
过去 6 个月有无以下临床表现(可多选)：
□无不适临床表现
□最近 3 个月内体重下降 10%
以上
□原因不明发热持续 1
□原因不明腹泻持续 1
个月及以上
个月及以上
□成人鹅口疮
□反复发作的单纯疱疹
□半年内活动性肺结核或/
□其他艾滋病相关性疾病___________________(请注
和肺外结核
明)
病程阶段： □艾滋病病毒感染者
□艾滋病病人（艾滋病确诊日期：_________年_____
月_____日） 当前配偶/固定性伴感染状况：□无配偶/固定性伴□未查/不详
□阴性
□阳性
□检测结果不确定
有无 HIV 阳性子女：
□无子女
□未查/不详
□是
□否
□无阳性子女 □有阳性子
女 □检测结果不确定
现在是否为同伴教育员：
过去 3 个月，是否每次发生性行为都用安全套：
□是
□否
□未
□否
□无
□否
□无
发生性行为
如果回答“否”，在最近 3 个月有_______人与您有过性行为？
过去 3 个月，是否共用过注射器注射毒品：
□是
注射吸毒行为
如果回答“是”，在最近 3 个月有_______人与您共用过注射器？
过去 3 个月，是否参加针具交换：
□是
注射吸毒行为
如果回答“是”，在最近 3 个月交出针具____支/换回针具____支？
若为育龄妇女，完成如下问题（若为非育龄妇女，以下三项不选择）
： 过去 3 个月，
是否采取避孕措施：
□是
□否
419
是否怀孕：
□是
是否分娩：
□是(活产
□否
个/死产
个)
□否
过去 6 个月您或您的家庭是否获得过来自亲戚、
朋友以外的其他组织(包括政府和非政府组织)
或个人的关怀、支持和服务：
宣传咨询（宣传材料、咨询服务）
： □是（获得安全套____个/获得宣传材料____份）
□否 药物提供（提供抗机会性感染药物）：□是
□否
关怀救助（经济支持、生活帮助）
： □是 □否 过去 6 个月是否接受过结核病筛查：□是（□肺结核 □肺外结核 □未患结核 □结果不清
楚 ） □否 目前是否接受抗病毒治疗：
□是（抗病毒治疗编号：□□□□□□□□）
□否
目前是否接受社区美沙酮维持治疗：□是（社区美沙酮维持治疗编号:□□□□□□□□□□
□□）□否
自上次随访以来，做过 CD4+检测
次（最近一次 CD4+检测结果：______个/μl；检测日期：
______年____月____日）
随访执行单位：
随访责任人：
随访日期：_______年
_________________
___________
____月____日
备注：
420
Appendix VIII: the Infectious Disease Reporting Card—HIV/AIDS and STDs
Subsidiary Card
中华人民共和国传染病报告卡 卡片编号： 报卡类别： 1、 初次报告
2、订正
报告 患者姓名*： （患儿家长姓名： ） 身份证号： 性别*： 男 女 出生日期*： 年 月 日（如出生日期不详，实足年龄： 年龄单位： 岁 月 天） 工作单位： 联系电话： 病人属于*： 本县区 本市其他县区 本省其它地市 外省 港澳台 外籍 现住址（详填）*： 省 市 县（区） 乡（镇、街道） 村 （门牌号） 患者职业*： 幼托儿童、 散居儿童、 学生（大中小学）
、 教师、 保育员及保姆、 餐饮食品业、 商业服务、 医务人员、 工人、 民工、 农民、 牧民、 渔（船） 民、 干部职员、 离退人员、 家务及待业、 其
他（ ）、 不详 病例分类*：(1) 疑似病例、 临床诊断病例、 实验室确诊病例、 病原携带者 (2) 急性、 慢性（乙型肝炎、血吸虫病填写） 发病日期*： 年 月 日（病原携带者填初检日期或就诊时间） 诊断日期*： 年 月 日 死亡日期 ： 年 月 日 甲类传染病*： 鼠疫、 霍乱 乙类传染病*： 传染性非典型肺炎、 艾滋病、 病毒性肝炎（ 甲型、 乙型、 丙型、 戍型、 未分型）、 脊髓灰质炎、 人感染高致病性禽流感、 麻疹、 流行性出血热、 狂犬病、 流行性乙型脑炎、 登
革热、 炭疽（ 肺炭疽、 皮肤炭疽、 未分型）、痢疾（ 细菌性、 阿米巴性）、肺结核（ 涂阳、 仅培
阳、 菌阴、 未痰检）、伤寒（ 伤寒、 副伤寒）、 流行性脑脊髓膜炎、 百日咳、 白喉、 新生儿
421
破伤风、 猩红热、 布鲁氏菌病、 淋病、梅毒（ Ⅰ期、 Ⅱ期、 Ⅲ期、 胎传、 隐性）
、 钩端螺旋
体病、 血吸虫病、 疟疾（ 间日疟、 恶性疟、 未分型） 丙类传染病*： 流行性感冒、 流行性腮腺炎、 风疹、 急性出血性结膜炎、 麻风病、 流行性和地方性斑疹伤
寒、 黑热病、 包虫病、 丝虫病， 除霍乱、细菌性和阿米巴性痢疾、伤寒和副伤寒以外的感染性腹泻病。 其他法定管理以及重点监测传染病：
订正病名： 退卡原因： 报告单位： 联系电话： 报告医生： 填卡日期*： 年 月 日 备注： 注意保密 传染病报告卡艾滋病性病附卡 卡片编号： 患者姓名：______________ （患儿家长姓名：________________）
民族： ___________
族
婚姻状况： □未婚
□已婚有配偶
□离异或丧偶 □不详
文化程度： □文盲
□小学
□初中
□高中或中专
□大专及以
上
户籍地址： ________ 省 ________市 ________ 县________ 乡(镇、街道)__________ 村
______(门牌号)
疾病名称： □艾滋病病毒感染
□艾滋病
梅毒（□I 期 □II 期 □III 期 □胎传 □隐性）
□淋病
生殖道沙眼衣原体感染（□确诊病例 □无症状感
□尖锐湿疣
染）
器疱疹
□生殖
接触史：(可多选)
□注射毒品史（在您记忆中有_______人与您共用过注射器？）
□非婚异性性接触史（在您记忆中有_______人与您有过非婚性行为？）
□配偶/固定性伴阳性
□男男性行为史（在您记忆中有_______人与您有过同性性行为？）
422
□献血（浆）史
史
□其他
□手术史
性病史：
□输血/血制品
______(请注明)
□有
□无
□母亲阳性
□职业暴露史
□不详
□不详
最可能的感染途径(单选)：
□注射毒品
□异性传播
□同性传播
□采血(浆)
□输血/血制品
□母婴传播
□其他
______(请注明)
□性接触 + 注
射毒品
□职业暴露
□不详
检测样本来源(单选)： □术前检测
□婚前检查(含涉
外婚姻)
□女性阳性者子
女检测
□无偿献血人员
检测
□妇教所/女劳收
教人员检测
实验室检测结论：
□受血(制品)前
检测
□性病门诊
□孕产期检查
□检测咨询
□职业暴露检测
□娱乐场所人员
体检
□出入境人员体
检
□其他羁押人员
体检
□确认检测阳性
□新兵体检
□专题调查
□其他就诊者检
测
□阳性者配偶或
性伴检测
□有偿供血(浆)
人员检测
□强制/劳教戒毒
人员检测
□其他
_______(请注明)
□替代策略检测阳性
确认（替代策略）检测阳性日期：_________年_____月_____日
确认（替代策略）检测单位： __________________________ 艾滋病确诊日期*： _________年_____月_____日
报告单位：
联系电话：
报告医生：
填卡日期：
月
年
日
备注：
* 只有确诊为艾滋病病人时填写此项。
423
Appendix IX the Informing Letter for the HIV Positive Result
424
Bibliography
Aday, D.P., Jr. (1990). Social Control at the Margins—Toward a General Understanding of Deviance.
California: Wadsworth.
Agaibi, C.E. & Wilson, J.P. (2005). Trauma, PTSD, and resilience: a review of the literature. Trauma,
Violence, & Abuse, 6(3): 195-216. DOI: 10.1177/1524838005277438
Alexander, J.C. (2004). Toward a theory of cultural trauma. In J.C. Alexender, R. Eyerman, B. Giesen,
N.J. Smelser, & P. Sztompka (eds.), Cultural Trauma and Collective Identity (pp,1-30).
Berkeley, CA: University of California Press.
Albarracin, D., Johnson, B., Fishbein, M., & Muellerleile, P.A. (2001). Theories of Reasoned Action
and Planned Behavior as Models of Condom Use: A Meta-Analysis. Psychological Bulletin,
127(1):142-161. DOI: 10.1037/0033-2909.127.1.142
Andersen, M.D., Smereck, G.A., Hockman, E.M., Ross, D.J. & Ground, K.J. (1999). Nurses decrease
barriers to health care by “hyperlinking” multiple-diagnosed women living with HIV/AIDS into
care. Journal of the Association of Nurses in AIDS Care, 10: 55-65. doi:
10.1016/S1055-3290(06)60299-9
Apolonio, E.G., Hoover, D.R., He, Y., Saah, A.J., Lyter, D.W., Detels, R., Kaslow, R.A., & Phair, J.P.,
(1995). Prognostic factors in human immunodeficiency virus positive patients with a CD4+
lymphocyte count<50/microL, Journal of Infectious Diseases, 171(4), 829-836. doi:
10.1093/infdis/71.4.829
Ashman, J.J., Conviser, R., & Pounds, M.B. (2002). Associations between HIV-positive individuals’
receipt of ancillary services and medical care receipt and retention. AIDS Care, 14(Suppl.1),
S109-S118.
Asia Pacific Network of People Living with HIV/AIDS (ANP+) (2004). ANP+ Position Paper 2 GIPA.
Retrieved from http://www.ahrn.net/library_upload/uploadfile/file1777.pdf
Asia Pacific Coalition on Male Sexual Health (2008). APCOM Policy Brief No.02: Critical HIV
Research for Better Decision Making. Retrieved from
http://www.msmaisa.org/tl_files/resources/APCOM_policy_brief_1_msm_in_asia_pacific_critic
al_hiv_research_for_better_decision_making.pdf
Atkinson, P. & Pugsley, L. (2005). Making sense of ethnography and medical education. Medical
Education, 39: 228-234. doi: 10.1111/j.1365-2929.2004.02070.x
Baer, H.A., Singer, M., & Susser, I. (Eds,). (2003). Medical anthropology and the world system.
Westport, CT: Praeger.
Bandura, A. (2001). Social cognitive theory: An agentic perspective. Annual Review of Psychology,
52(1): 1-26.
Bandura A. (1986). Social foundations of thought and action: a social cognitive theory. Englewood
Cliffs, NJ: Prentice-Hall.
Beck, J.S. (1995) In: Cognitive therapy: Basics and Beyond. Catania JA, Kegeles S, Coates TJ,
425
editors. NY: Guildford Press; as cited in Safren, S.A., Traeger, L., Skeer, M.R., O’Cleirigh, C.,
Meade, C.S., Covahey, C., Mayer, K.H. (2010). Testing a social-cognitive model of HIV
transmission risk behaviors in HIV-infected MSM with and without depression. Health
Psychology, 29(2): 215-221. DOI: 10.1037/a0017859
Beck, A.T. (1972). Cognitive therapy and the emotional disorders. NY: International Universities
press, as cited in Safren, S.A., Traeger, L., Skeer, M.R., O’Cleirigh, C., Meade, C.S., Covahey,
C., Mayer, K.H. (2010). Testing a social-cognitive model of HIV transmission risk behaviors in
HIV-infected MSM with and without depression. Health Psychology, 29(2): 215-221. DOI:
10.1037/a0017859
Berg, M.B., Mimiaga, M.J., & Safren, S.A. (2004). Mental health concerns of HIV-infected gay and
bisexual men seeking mental health services: an observational study. AIDS Patient Care and
STDs, 18(11): 635-643. doi: 10.1089/apc.2004.18.635
Begley, K., Chan, D.J., Jeganathan, S., Batterham, M., & Smith, D.E. (2009). Factors associated with
unprotected anal intercourse between HIV-positive men and regular male partners in a Sydney
cohort. International Journal of STD & AIDS, 20: 704-707. doi: 10.1258/ijsa.2009.009137
Behringer, K. (2008). HIV/AIDS prevention: Factors affecting risky sexual behaviors among MSM in
Shenzhen, China. UCHC Graduate School Masters These 2003-2010. Paper 144. Retrieved
from http://digitalcommons.uconn.edu/uchcgs_masters/144
Berger, B.E., Ferrans, C.E., & Lashley, F.R. (2001). Measuring stigma in people with HIV:
Psychometric assessment of the HIV stigma scale. Research in Nursing & Health, 24(6),
518-529. DOI: 10.1002/nur.10011
Begley, K., Chan, D.J., Jeganathan, S., Batterham, M., & Smith, D.E. (2008). Correlates of
unprotected anal intercourse in HIV positive men attending an HIV/AIDS Clinic in Sydney.
Current HIV Research, 6(6):579-584.
Bernard, H.R. (1995). Research Methods in Anthropology—Qualitative and Quantitative Approaches.
Walnut Creek, CA: Altamira
Bernard, H.R. (2006). Research Methods in Anthropology: Qualitative and Quantitative Approaches
(4th edition). Thousand Oaks, CA: Sage Publications.
Bernard, H.R. & Ryan, G.W. (2010). Analyzing Qualitative Data: Systematic Approaches. California:
SAGE.
Bernard, H.R. (2011). Research Methods in Anthropology. Lanham, Maryland: AltaMira Press.
Bernstein, R.J. (1977). Hannah Arendt: The Ambiguities of Theory and Practice. In T. Ball (Ed.),
Political Theory and Praxis: New Perspectives (pp. 141–158). Minneapolis: University of
Minnesota.
Bezemer, D., de Wolf, F., Boerlijst, M.C., van Sighem, A., Hollingsworth, T.D., Prins, M., Geskus,
R.B., Gras, L., Coutinho, R.A., Fraser, C. (2008). A resurgent HIV-1 epidemic among men who
have sex with men in the era of potent antiretroviral therapy. AIDS, 22(9): 1071-7.
Bing, E., Burnam, M., Longshore, D., Fleishman, J., Sherbourne, C., London, A., Turner, B.J., Eggan,
426
F., Beckman, R., Vitiello, B., Morton, S., Orlando, M., Bozzette, S.A., Ortiz-Barron, L., &
Shapiro, M. (2001). Psychiatric disorders and drug use among human immunodeficiency
virus-infected adults in the United States. Archives of General Psychiatry, 58, 721-728.
Bingman, C.R., Marks, G., & Crepaz, N. (2001). Attributions about one’s HIV infection and unsafe
sex in seropositive men who have sex with men. AIDS and Behavior, 5(3): 283-289. DOI:
10.1023/A:1011348828325
Brennan, D.J., Welles, S.L., Miner, M.H., Ross, M.W., Rosser, B.R.S., & The Positive Connections
Team (2010). HIV treatment optimism and unsafe anal intercourse among HIV positive men
who have sex with men: Findings from the positive connections study. AIDS Education and
Prevention, 22(2), 126-137. doi: 10.1521/aeap.2010.22.2.126
Brickleya, D.B., Almersb, L., Kennedyc, C.E., Spauldingd, A.B., Mirjahangira, J., Kennedya, G.E.,
Packel, L., Osborne, K., Mbizvo, M., & Collins, L. (2011). Sexual and reproductive health
services for people living with HIV: a systematic review. AIDS Care, 23(3): 303-314. DOI:
10.1080/09540121.2010.507746
Broadbent, E., Petrie, K.J., Main, J. & Weinman, J. (2006). The brief illness perception questionnaire.
Journal of Psychosomatic Research, 60: 631-637. doi: 10.1016/j.jpsychores.2005.10.020
Burke, P.J. & Tully, J.C. (1977). The measurement of role identity. Social Forces (55) (4): 881-97.
URL: http://www.jstor.org/stable/2577560
Burke, P.J. (2007). Identity control theory. In G. Ritzer (Ed), Blackwell Encyclopedia of Sociology.
Blackwell Publishing. Retrieved 31 March 2009 from Blackwell Reference Online.
Burnam, M., Bing, E., Morton, S., Shherbourne, C., Fleishman, J., London, A., Vitiello, B., Stein, M.,
Bozzette, S.A., & Shapiro, M.F. (2001). Use of mental health and substance abuse treatment
services among adults with HIV in the United States. Archives of General Psychiatry, 58,
729-736.
Cai, W.D., Zhao, J., Zhao, J.K., Raymond, H.F., Feng, Y.J., Liu, J., McFarland, W., Gan, Y.X., Yang,
Z.R., Zhang, Y., Tan, J.G., Wang, X.R., He, M.L., Cheng, J.Q., & Chen, Lin (2010). HIV
prevalence and related risk factors among male sex workers in Shenzhen, China: results from
a time-location sampling survey. Sex Transm Infect, 86:15-20. doi: 10:1136/sti.2009.037440
Calzavara, L.M., Burchell, A.N., Lebovic, G., Myers, T., Remis, R.S., Rabound, J., Corey, P., Swantee,
C. & Hart, T.A. (2011). The impact of stressful life events on unprotected anal intercourses
among gay and bisexual men. AIDS and Behavior, online first, DOI:
10.1007/s10461-010-9879-5
Cameron, C.A., Ungar, M., & Liebenberg, L. (2007). Cultural understandings of resilience: Roots for
Wings in the development of affective resources for resilience. Child Adolescent Psychiatric
Clinics of North America, 16: 285-301. Doi: 10.1016/j.chc.2006.11.001
Campbell, C. & Deacon, H. (2006). Unravelling the contexts of stigma: From internalization to
resistance to change. Journal of Community & Applied Social Psychology, 16, 411-417. DOI:
10.1002/casp.901
427
Castellano, U. (2007). Becoming a nonexpert and other strategies for managing fieldwork dilemmas
in the criminal justice system. Journal of Contemporary Ethnography, 36: 704-730. DOI:
10.1177/0891241607303529
Castells, M. (1997). The Power of Identity. Malden, MA: Blackwell.
Cater, S. (1996). Reducing aids risk: A case of mistaken identity? Science as Culture, 6(2): 220-245.
DOI: 10.1080/09505439609526465
Catalan, J. (1999). Mental Health and HIV Infection: Psychological and Psychiatric Aspects. London:
UCL Press
Center for Diseases Control and Prevention, the United States (2008, January 30). Syndemics
Prevention Network. Retrieved April 12 2011 from http://www.cdc.gov/syndemics
Chae, D.H. & Ayala, G. (2010). Sexual orientation and sexual behavior among Latino and Asian
Americans: implications for unfair treatment and psychological distress. Journal of Sex
Research, 47(5), 451-459. DOI: 10.1080/00224490903100579
Chae, D.H. &Yoshikawa, h. (2008). Perceived group devaluation, depression, and HIV-risk behavior
among Asian gay men. Health Psychology, 27(2): 140-148. doi: 10.1037/0278-6133.27.2.140
Chakrapani, V., Newman, P.A. and Shunmugam, M. (2008). Secondary HIV prevention among
Kothi-identified MSM in Chennai, India. Culture, Health & Sexuality, 10(4): 313-327. DOI:
10.1080/13691050701816714
Chan, K.Y., Yang, Y., Zhang, K.L., & Reidpath, D.D. (2007). Disentangling the stigma of HIV/AIDS
from the stigmas of drugs use, commercial sex and commercial blood donation—a factorial
survey of medical students in China. BMC Public Health, 7: 280. doi:
10.1186/1471-2458-7-280
Chan, K.W. (2009). The Chinese Hukou System at 50. Eurasian Geography and Economics, 50(2):
197-221. DOI: 10.2747/1539-7216.50.2.197
Chandler, M.J., & Lalonde, C. (1998).Cultural continuity as a hedge against suicide in Canada’s First
nations. Transcultural Psychiatry, 35: 191-219. doi: 10.1177/136346159803500202
Chen, L.. (2010). HIV prevalence and related risk factors among male sex workers in Shenzhen,
China: results from a time-location sampling survey. Sexually Transmitted Infections, 86: 15-20.
doi: 10.1136/sti.2009.037440
Chen, Q., Zhou, Z., Wen, Y., Lu, W., Huang, G., & Jia, M. (2004). HIV/AIDS renyuan xinli weisheng
zhuangkuang yu xinli shehui yingxiang yinsu [Effect of mental health and psychosocial factors
in individuals with HIV/AIDS]. Zhongguo xinli weisheng zazhi [Chinese Mental Health Journal],
18: 850–853.
Cheng, L., Feng, T.J., Tan, J.G., Cai, W.D., Shi, X.D., Wang, X.H., Gan, Y.X., & Zhang, Y. (2008).
Estimate the male homosexual population in Shenzhen by capture-mark-recapture method in
2006. Journal of Tropical Medicine, 8(2), 175-176. DOI: CNKI:SUN:RDYZ.0.2008-02-029
Cheng, W.B., Zhong, F., Wen, F., Gao, K., Liu, J.W., Luo, B.L., Xu, H.F., & Wang, M. (2010). 广州市
男男商业性服务人群 HIV、梅毒感染及 AIDS 相关行为调查[Investigation of HIV and syphilis
428
infection and AIDS-related behaviors among money boys, in Guangzhou, China]. 中华预防医
学杂志 [Chinese Journal of Preventive Medicine], 44(11):1027-31.
Chengdu Gay Care Organization (2010). Annual Report in 2010. Chengdu: Chengdu Gay Care
Organization (www.tlgay.com)
Chou, F.Y., Holzemer, W., Portillo, C.J., & Slaughter, R. (2004). Self-care strategies and sources of
information for HIV/AIDS symptom management. Nursing Research, 53(5), 332-339.
China Global Fund HIV/AIDS Program (2010). AIDS, retrieved from http://www.chinaglobalfund.org
China Ministry of Health, UN Theme Group on HIV/AIDS in China (2003). A joint assessment of
HIV/AIDS prevention, treatment and care in China. Retrieved 20 December 2011 from
http://data.unaids.org/UNA-docs/china_joint_assessment_2003_en.pdf
China Ministry of Health, UNAIDS, & WHO (2006). 2005 Update on the HIV/AIDS epidemic and
response in China. Retrieved 20 December 2011 from
http://data.unaids.org/publications/External-Documents/rp_2005chinaestimation_25jan06_en.
pdf.
China Ministry of Health, UN Theme Group on HIV/AIDS in China (2007). A joint assessment of
HIV/AIDS prevention, treatment and care in China. Retrieved 20 December 2011 from
http://www.undp.org.cn/downloads/otherlocal/HIV/20080104.pdf.
China Ministry of Health, UNAIDS, & WHO (2010). 2009 estimates for the HIV/AIDS epidemic in
China. Retrieved 20 December 2011 from
http://www.unaids.org.cn/download/2009%20China%20Estimation%20Report-En.pdf.
China Ministry of Health, Joint United Nations Programme on HIV/AIDS (UNAIDS), & World Health
Organization (WHO) (2011). China HIV/AIDS Epidemic Estimation in 2011. 28 January 2012,
Retrieved from http://www.chinaids.org.cn/n16/n1193/n4073/n745902.files/n745901.pdf
China National Bureau of Statistics. (2009). The 2008 Statistics Bulletin of the National Economic
and Social Development of the People's Republic of China. Retrieved from
http://www.stats.gov.cn/tjgb/ndtjgb/qgndtjgb/t20090226_402540710.htm
Chiu, C.Y., Dweck, C.S., Tong, J.Y.Y., & Fu, J.H.Y. (1997). Implicit theories and conceptions of
morality. Journal of Personality and Social Psychology, 73(5): 923-940. doi:
10.1037/0022-3514.73.5.923
Chiu, C., & Hong, Y. (1997). Justice from a Chinese perspective. In H.S.R. Kao & D. Sinha (Eds.),
Asian perspectives on psychology (pp. 164-184). Thousand Oaks, CA: Sage, as cited in Chiu,
C.Y., Dweck, C.S., Tong, J.Y.Y., & Fu, J.H.Y. (1997). Implicit theories and conceptions of
morality. Journal of Personality and Social Psychology, 73(5): 923-940. doi:
10.1037/0022-3514.73.5.923
Choi, K.H., Hudes, E.S. & Steward, W.T. (2008). Social discrimination, concurrent sexual
partnerships, and HIV risk among men who have sex with men in Shanghai, China. AIDS and
Behavior, 12(suppl 1): S71-S77. DOI: 10.1007/s10461-008-9394-0
Choi, K. H., Lui, H., Guo, Y., Han, L., Mandel, J. S. (2006). Lack of HIV testing and awareness of HIV
429
infection among men who have sex with men, Beijing, China. AIDS Education and Prevention,
18(1), 33-43.
Chow, EPF, Wilson, DP, Zhang, J., Jing, J., Zhang, L. (2011). Human immunodeficiency virus
prevalence is increasing among men who have sex with men in China: findings from a review
and meta-analysis. Sexually Transmitted Diseases, 38(9): 845-857. Doi:
10.1097/OLQ.0b013e31821a4f43
Ciccarone, D.H., Kanouse, D.E., Collins, R.L., Miu, A., Chen, J.L., Morton, S.C., & Stall, R. (2003).
Sexual without disclosure of positive HIV serostatus in a US probability sample of persons
receiving medical care for HIV infection. American Journal of Public Health, 93: 949-54. doi:
10.2105/AJPH.93.6.949
Clark, J.L., Konda, K.A., Segura, E.R., Salvatierra, H.J., Leon, S.R., Hall, E.R., Caceres, C.F.,
Klausner, J.D., & COATES, T.J. (2008). Risk factors for the spread of HIV and other sexually
transmitted infections among men who have sex with men infected with HIV in Lima, Peru.
Sexually Transmitted Infections, 84: 449-454. doi: 10.1136/sti.2008.031310
Colfax, G.N., Buchbinder, S.P., Cornelisse, P.G.A., Vittinghoff, E., Mayer, K. and Celum, C. (2002).
Sexual risk behaviors and implications for secondary HIV transmission during and after HIV
seroconversion. AIDS, 16: 1529-1535.
Crook, J., Browne, G., Roberts, J. & Gafni, A. (2005). Impact of support services provided by a
community-based AIDS services organization on persons living with HIV/AIDS. Journal of the
Association of Nurses in AIDS Care, 16(4): 39-49. doi: 10.1016/j.jana.2005.05.003
Cohen, M.H. (1993). The unknown and the unknowable-managing sustained uncertainty. Western
Journal of Nursing Research, 15(1): 77-96. DOI: 10.1177/019394599301500106
Connolly, P. (1998). ‘Dancing to the wrong tune’: ethnography generation and research on racism in
schools. In P. Connolly & B. Troyna (Eds.), Researching Racism in Education: Politics, Theory,
and Practice (pp. 122-139). Buckingham, UK: Open University Press, as cited in Onwuegbuzie,
A.J. & Leech, N.L. (2007). A call for qualitative power analyses. Quality & Quantity, 41:
105-121. DOI: 10.1007/s11135-005-1098-1
Coyne I.T. (1997) Sampling in qualitative research. Purposeful ad theoretical sampling; merging or
clear boundaries? Journal of Advanced Nursing, 26(3), 623-630. DOI:
10.1046/j.1365-2648.1997.t01-25-00999.x
Corbin, J. & Strauss, A. (2008). Basics of Qualitative Research: Techniques and procedures for
developing grounded theory (3rd edition). Thousand Oaks, CA: Sage.
Cochran, S.D., Sullivan, J.G., & Mays, V.M. (2003). Prevalence of psychiatric disorders,
psychological distress, and treatment use among lesbian, gay, and bisexual individuals in a
sample of the US population Journal of Consulting and Clinical Psychology, 71(1), 53-61. doi:
10.1037/0022-006X.71.1.53
Cochran, S.D., Mays, V.M., Ortega, A.N., Alegria, M., & Takeuchi, D. (2007). Mental health and
substance use disorders among Latino and Asian American lesbian, gay, and bisexual adults.
430
Journal of Consulting and Clinical Psychology, 75(5): 785-794. doi:
10.1037/0022-006X.75.5.785
Community forum on AIDS, Hong Kong advisory council on AIDS, & Hong Kong coalition of AIDS
service organization (July 2011). Community stakeholders consultation meeting for
development of recommended HIV/AIDS strategies for Hong Kong 2012-2016—Summary for
the session on people living with HIV. Retrieved from
http://www.info.gov.hk/aids/pdf/g238_PLHIV.pdf
Cohen, S. (1988). Psychosocial models of the role of social support in the etiology of physical
disease. Health Psychology, 7, 269-297. doi: 10.1037/0278-6133.7.3.269
Conner, K.M. (2006). Assessment of resilience in the aftermath of trauma. Journal of Clinical
Psychiatry, 67(suppl 2): 46-49.
Conviser, R., & Pounds, M. B. (2002a). Background for the studies on ancillary services and primary
care use. AIDS Care, 14(suppl.1), S7-S14.
Conviser, R., & Pounds, M. B. (2002b). The role of ancillary services in client-centered systems of
care. AIDS Care, 14(suppl.1), S119-S131.
Courtenay-Quirk, C., Wolitski, R.G., Parsons, J.T., & Gomez, C.A. (2006). Is HIV/AIDS stigma
dividing the gay community? Perceptions of HIV-positive men who have sex with men. AIDS
Education and Prevention, 18(1): 56-67. doi: 10.1521/aeap.2006.18.1.56
Craft, S.M., Smith, S.A., Serovich, J.M., & Bautista, D.T. (2005). Need fulfillment in the sexual
relationships of HIV-infected men who have sex with men. AIDS Education and Prevention,
17(3): 217-226. doi: 10.1521/aeap.17.4.217.66528
Crepaz, N., Passion, W.F., Herbst, J.H., Rama, S.M., Malow, R.M., Purcell, D.W., Wolitski, R.J., &
HIV/AIDS Prevention Research Synthesis Team. (2008). Meta-analysis of cognitive-behavioral
interventions on HIV-positive person’s mental health and immune functioning. Health
Psychology, 27(1): 4-14. DOI: 10.1037/0278-6133.27.1.4
Crepaz, N., Marks, G., Liau, A., Mullins, M.M., Aupont, L.W., Marshall, K.J., Jacobs, E.D., Wolitski,
R.J., for the HIV/AIDS Prevention Research Synthesis (PRS) Team (2009). Prevalence of
unprotected anal intercourse among HIV-diagnosed MSM in the United States: a
meta-analysis. AIDS, 23(13): 1617-1629. DOI:10.1097/QAD.0b013e32832effae
Crepaz, N., Hart, T.A., & Marks, G. (2004). Highly active antiretroviral therapy and sexual risk
behavior. JAMA The Journal of the American Medical Association, 292(2): 224-236. doi:
10.1001/jama.292.2.224
Crepaz, N., & Marks, G. (2001). Are negative affective states associated with HIV sexual risk
behavior? A meta-analytic review. Health Psychology, 20(4): 291-299. doi:
10.1037/0278-6133.20.4.291
Creswell, J.W. (1998). Qualitative inquiry and research design: choosing among five traditions.
Thousand Oaks, CA: Sage, as cited in Onwuegbuzie, A.J. & Leech, N.L. (2007). A call for
qualitative power analyses. Quality & Quantity, 41: 105-121. DOI: 10.1007/s11135-005-1098-1
431
Crook, J., Browne, G., Roberts, J., & Gafni, A. (2005). Impact of support services provided by a
community-based AIDS service organization on persons living with HIV/AIDS. Journal of the
Association of Nurses in AIDS Care, 16(4): 39-49. doi: 10.1016/j.jana.2005.05.003
Cutcliffe, J.R. (1995). How do nurses inspire and instill hope in terminally ill HIV patients. Journal of
Advanced Nursing, 22(5), 888-895. DOI: 10.1111/j.1365-2648.1995.tb02639.x
D’Andrade, R. (1995). The development of cognitive anthropology. Cambridge: University Press.
D’Augelli, A.R. (2002). Mental health problems among lesbian, gay, and bisexual youths ages 14 to
21. Clinical Child Psychology and Psychiatry, 7(3): 439-462. Doi:
10.1177/1359104502007003010
Davis, D., & Chapman, N. (2002) Turning points in Chinese healthcare: Crisis or opportunity?
Yale-China Health Journal, 11; 3-6. Retrieved from
http://www.acad.polyu.edu.hk/~mspeter/chinaOverview.pdf
Deacon, H. (2006). Towards a sustainable theory of health-related stigma: Lessons from the
HIV/AIDS literature. Journal of Community & Applied Social Psychology. Special Issue:
Understanding and Challenging Stigma, 16(6), 418-425. DOI: 10.1002/casp.900
de Lind van Wijngaarden, J.W., Brown, T., Girault, P., Sarkar, S., van Griensven, F. (2009). The
epidemiology of human immunodeficiency virus infection, sexually transmitted infections, and
associated risk behaviors among men who have sex with men in the Mekong Subregion and
China: implications for policy and programming. Sexually Transmitted Diseases, 36(5),
319-324. Doi: 10.1097/OLQ.0b013e318195c302
DeMarco, F.J., Ostrow, D.G., & DiFranceisco, W. (1999). General and AIDS-specific stress, coping,
and psychological distress in the biracial coping and change study cohort of gay men. AIDS
and Behavior, 3(3): 177-186. Doi: 10.1023/A:1025496209190
Denzin, N.K. & Lincoln, Y.S. (2000). The discipline and practice of qualitative research. In N.K.
Denzin & Y.S. Lincoln (Eds.), Handbook of Qualitative Research (2nd ed.) (pp. 1-28). Thousand
Oaks, CA: Sage.
Denning, P.H. & Campsmith, M.L. (2005). Unprotected anal intercourse among HIV-positive men
who have a steady male sex partner with negative or unknown HIV serostatus. American
Journal of Public Health, 95(1):152-158. doi: 10.2105/AJPH.2003.017814
Diaz, R.M. & Ayala, G. (2000). Social discrimination and health: the case of Latino gay men and HIV
risk. Washington, DC: The Policy Institute of the National Gay and Lesbian Task Force.
DiClemente, R.J. & Peterson, J.L. (1994). Preventing AIDS: Theories and Methods of Behavioral
Interventions. New York: Plenum Press
Draucker, C.B., Martsolf, D.S., Ross, R., & Rusk, T.B. (2007). Theoretical sampling and
category development in grounded theory. Qualitative Health Research, 17:1137.
DOI: 10.1177/1049732307308450
Drumright, L.N., Little, S.J., Strathdee, S.A., Slymen, D.J., Araneta, M.R.G., Malcarne, V.L., Daar,
E.S., & Gorbach, P.M.(2006). Unprotected anal intercourse and substance use among men
432
who have sex with men with recent HIV infection. JAIDS Journal of Acquired Immune
Deficiency Syndromes, 43; 344-350. Doi: 10.1097/01.qai.0000230530.02212.86
Dunn, E.W., Aknin, L.B., Norton, M.I. (2008). Spending money on others promotes happiness.
Science, 319:1687-1688. DOI: 10.1126/science.1150952
Durkheim, E. (1897/1951). Suicide: A study in sociology. New York: Free Press, as cited in Bearman,
P.S. (1991). The social structure of suicide. Sociological Forum, 6(3): 501-524. Retrieved from
http://www.jstor.org/stable/684516
Eaton, L.A., Kalichman, S.C., O’Connell, D.A., & Karchner, W.D. (2009). A strategy for selecting
sexual partners believed to pose little/no risks for HIV: Serosorting and its implications for HIV
transmission. AIDS Care, 21(10): 1279-1288. doi:10.1080/09540120902803208.
Emerson, R.M. & Pollner, M. (2001). Constructing participant/observation relations. In R.M. Emerson
(ed.), Contemporary field research: perspectives and formulations (pp. 239-259). Long Grove,
IL: Waveland Press, as cited in Castellao, (2007). Becoming a nonexpert and other strategies
for managing fieldwork dilemmas in the criminal justice system. Journal of Contemporary
Ethnography, 36: 704-730. DOI: 10.1177/0891241607303529
Evan, D.L., Lesserman, J., Perkins, D.L., et al., (1997). ‘Severe life stress as a predictor of early
disease progression in HIV infection’, American Journal of Psychiartry, 154: 630-634, as cited
in Catalan, J. (1999). Mental Health and HIV Infection: Psychological and Psychiatric Aspects
(pp.24). London: UCL Press
Fan, C.C. (2003). Rural-urban migration and gender division of labor in transitional China.
International Journal of Urban and Regional Research, 27(1), 24-47. Doi:
10.1111/1468-2427.00429
Fang, G., Jiang, Q., & Dong, Y. (2007). Longchun youchang xianxue aizibing huanzhe xinli
zhuangkuang diaocha fenxi [Analysis and study of psychological state among paid blood
donors with HIV in rural areas]. Zhonghua Jibing kongzhi zazhi [Chinese Journal of disease
control & prevention], 11(2): 127-129.
Farmer, P. (1999). Infections and inequalities: The modern plagues. Berkeley: University of California
Press.
Farmer, P. (2003). Pathologies of power: health, human rights, and the new war on the poor.
Berkeley: University of California Press.
Farmer, P. (2004). An anthropology of structural violence. Current Anthropology, 45(3): 305-325. doi:
10.1086/382250
Farthing, G. (1992). The Psychology of Consciousness. Prentice Hall. ISBN 9780137286683
Fei, X. (1992). From the soil: The foundations of Chinese society. Berkeley, CA: University of
California Press
Feng, L.G., Ding, X.B., Lu, R.G., Liu, J., Sy, A., Ouyang, L., Pan, C., Yi, H., Liu, H., Xu, J. & Zhao, J.
(2009). High HIV prevalence detected in 2006 and 2007 among men who have sex with men
in China’s largest municipality: an alarming epidemic in Chongqing, China. JAIDS Journal of
433
Acquired Immune Deficiency Syndromes, 52(1): 79-85. doi: 10.1097/QAI.0b013e3181a4f53e
Feng, W., Zuo, X.J., & Ruan, D.C. (2002). Rural Migrants in Shanghai: Living Under the Shadow of
Socialism. International Migration Review, 36(2): 520-545. DOI:
10.1111/j.1747-7379.2002.tb00091.x
Fergusson, D.M., Horwood, L.J., Ridder, E.M., & Beautrais, A.L. (2005). Sexual orientation and
mental health in a birth cohort of young adults. Psychological Medicine, 35, 971-981. DOI:
10.1017/S0033291704004222
Foster, G.M., Scudder, T., Colson, E., & Kemper, R.V. (Eds.). (1979). Long-term field research in
social anthropology. New York: Academic Press, as cited in H.R. Bernard (1995), Research
Methods in Anthropology—Qualitative and Quantitative Approaches (pp.140). Walnut Creek,
CA: Altamira.
Finkel, N.J., Harre, R., & Lopez, J.L.R. (2001). Commonsense morality across cultures: Notions of
fairness, justice, honor and equity. Discourse Studies, 3: 5-27. DOI:
10.1177/1461445601003001001
Fisher, H.H., Purcell, D.W., Hoff, C.C., Parsons, J.T., & O’Leary, A. (2006). Recruitment source and
behavioral risk patterns of HIV positive men who have sex with men. AIDS and Behavior, 10:
553-561. doi: 10.1007/s10461-006-9109-3
Fleming, J. & Ledogar, R.J. (2008). Resilience, an evolving concept: A review of literature relevant to
aboriginal research. Pimatisiwin, 6(2): 7-23.
Forney, J.C. (2008). Risk and protective factors related to HIV-risk behavior: A comparison between
HIV-positive and HIV-negative young men who have sex with men (Unpublished master’s
these). Michigan State University, United States. Retrieved from
http://search.proquest.com/docview/304576244
Foucault, M. (1977). Discipline and punish. New York: Pantheon.
Foucault, M. (1978). The history of sexuality, Vol.1: An introduction. New York: Random House.
Gagnon, J.H. (1989). Sexuality across the life course in the United States. In C.F. Turner, H.G. Miller
and L.E. Moses (Eds.), AIDS: Sexual Behaviour, and Intravenous Drug Use (PP.500-536).
Washington, DC: National Academy Press.
Gee, R. (2006). Primary care health issues among men who have sex with men. Journal of the
American Academy of Nurse Practitioners, 18: 144-153. doi:
10.1111/j.1745-7599.2006.00117.x
Gielen, A.C., McDonnell, K.A., Wu, A.W., O’Campo, P., & Faden, R. (2001). Quality of life among
women living with HIV: the importance violence, social support, and self care behaviors. Social
Science and Medicine, 52, 315-322. DOI: 10.1016/S0277-9536(00)00135-0
Gibbie, T.M., Mijch, A., & Hay, M. (2011). High levels of psychological distress in MSM are
independent of HIV status. Journal of Health Psychology, published online before print 1
November 2011. DOI: 10.1177/1359105311425272
http://hpq.sagepub.com/content/early/2011/10/29/1359105311425272
434
Glanz, K. & Bishop, D.B. (2010). The role of behavioral science theory in development and
implementation of public health interventions. Annual Review of Public Health, 31: 399-418.
DOI: 10.1146/annurev.publhealth.012809.103604
Goffman, E. (1968). Stigma: notes on the management of spoiled identity. London: Pelican
Gottfredson, M. & Hirschi, T. (1990). A General Theory of Crime. Stanford: Stanford University Press.
Gottfredson, M.R. & Hirschi, T. (2003). Self-control and opportunity. In CL Britt and MR Gottfredson
(Eds.), Control theories of crime and delinquency (pp.5-19). New Brunswick, NJ: Transaction
Publishers.
Golden, M.R., Stekler, J., Hughes, J.P., & Wood, R.W. (2008). HIV serosorting in men who have sex
with men: Is it safe? JAIDS Journal of Acquired Immune Deficiency Syndromes, 49(2):
212-218. doi: 10.1097/QAI.0b013e31818455e8
Goodman, A. & Leatherman, T. (Eds.). (2001). Building a new biocultural synthesis:
political-economic perspectives on human biology. Ann Arbor: University of Michigan Press.
Good, B. (1994) Medicine, rationality, and experience—an anthropological perspective. Cambridge:
Cambridge University Press.
Gorbach, P.M., Galea, J.T., Amani, B., Shin, A., Celum, C., Kerndt, P., & Golden, M.R. (2004). Don’t
ask, don’t tell: patterns of HIV disclosure among HIV positive men who have sex with men with
recent STI practising high risk behaviour in Los Angeles and Seattle. Sexually Transmitted
Infections, 80:512-517. doi:10.1136/sti.2004.010918
Green, G. & Sobo, E.J. (2000). The endangered self: Managing the social risk of HIV. New York:
Routledge.
Green, J. & Thorogood, N. (2009). Qualitative methods for health research (second edition). London:
SAGE.
Green, G. & Smith, R. (2004). The psychosocial and health care needs of HIV positive people in the
United Kingdom: a review. HIV Medicine, 5(Suppl.1), 4-46. DOI:
10.1111/j.1468-1293.2004.00210.x
Guest, G., Bunce, A. & Johnson, L. (2006). How many interview are enough?: an experiment with
data saturation and variability. Field Methods, 18:59-82. doi: 10.1177/1525822X05279903
GU, Y. (2004). 中国衡平司法传统论纲 [Discussion and compendium of the Chinese tradition of
equity judicature]. 《政法论坛》（中国政法大学学报） [Tribune of Political Science and Law
(Journal of China University of Political Science and Law)], 22(2): 108-117.
Guangdong Province Civil Affairs Department (2011). Program of Further Fostering the Development
of Guangdong Province and Standardizing Management of Social Organizations. Retrieved 28
January 2012 from http://news.ifeng.com/shendu/fzzm/detail_2011_11/30/11000327_0.shtml
Guion, L.A., Diehl, D.C., & McDonald, D. (2011). Triangulation: establishing the validity of qualitative
studies. Retrieved January 5 2012 from http://edis.ifas.ufl.edu/pdffiles/FY/FY39400.pdf
Guo, H., Wei, J.F., Yang, H., Huan, X., Tsui, S.K.W., & Zhang, C. (2009). Rapidly increasing
prevalence of HIV and syphilis and HIV-1 subtype characterization among men who have sex
435
with men in Jiangsu, China. Sexually Transmitted Diseases, 36: 120-125. Doi:
10.1097/OLQ.0b013e31818d3fa0
Halpern-Felsher, B.L., Millstein, S.G., Ellen, J.M., Adler, N.E., Tschann, J.M., & Biehl, M. (2001). The
role of behavioral experience in judging risks. Health Psychology, 20(2): 120-6. doi:
10.1037/0278-6133.20.2.120
Hammersley, M. & Atkinson, P. (2007). Ethnography: principles in practice (Third edition). London:
Routledge.
Hammersley, M. & Atkinson, P. (1995). Ethnography: Principles in Practice. London: Routledge.
Harawa, N.T., Williams, J.K., Ramamurthi, H.C., & Bingham, T.A. (2006) Perceptions towards
condom use, sexual activity, and HIV disclosure among HIV-positive African American men
who have sex with men: implication for heterosexual transmission. Journal of Urban Health,
83(4), 682-694. DOI: 10.1007/s11524-006-9067-0
Hart, G.J., & Elford, J. (2010). Sexual risk behaviour of men who have sex with men: emerging
patterns and new challenges. Current Opinion in Infectious Diseases, 23: 39-44.
doi:10.1097/QCO.0b013e328334feb1
Hatzenburhler, M.L., Nolen-Hoeksema, S., & Erickson, S.J. (2008). Minority stress predictors of HIV
risk behavior, substance use, and depressive symptoms: results from a prospective study of
bereaved gay men. Health Psychology, 27(4): 455-62. Doi: 10.1037/0278-6133.27.4.455
Hu, J.N., Higgins, J., & Higgins, L.T. (2006). Development and limits to development of mental health
services in China. Criminal Behavior and Mental Health, 16(2): 69-76. DOI: 10.1002/cbm.626
Hawkins, D.R. (2002). Power VS Force: The hidden determinants of human behavior. Carlsbad, CA:
Hay House.
Hay, C. & Forrest, W. (2008). Self-control theory and the concept of opportunity: the case for a more
systematic union. Criminology, 46(4), 1039-1072. DOI: 10.1111/J.1745-9125.2008.00135.x
Hays, R.B. & Peterson, J.L. (1994). HIV prevention for gay and bisexual men in metropolitan cities.
Pp.267-295. In R.J. DiClemente & J.L. Peterson (Eds.), Preventing AIDS: Theories and
Methods of Behavioral Interventions. New York: Plenum Press.
He, N., Wong, F.Y., Huang, Z.J., Thompson, E.E., Fu, C. (2007). Substance use and HIV risks
among male heterosexual and 'money boy' migrants in Shanghai, China. AIDS Care, 19(1),
109-15. DOI: 10.1080/09540120600888394
Herek, G.M., Widaman, K.F., & Capitanio, J.P. (2005). When sex equals AIDS: Symbolic stigma and
heterosexual adults’ inaccurate beliefs about sexual transmission of AIDS. Social Problems,
52(1), 15-37. Doi: 10.1525/sp.2005.52.1.15
Hirschi, T. (1969). Causes of Delinquency. Berkeley: University of California Press.
Hirshfielda, S., Wolitskib, R.J., Chiassona M.A., Remienc, R.H., Humberstonea, M., & Wong, T.
(2008). Screening for depressive symptoms in an online sample of men who have sex with
men. AIDS Care, 20(8): 904-910. DOI: 10.1080/09540120701796892
Huebner, D. M., Rebchook, G. M., & Kegeles, S. M. (2004). Experiences of harassment,
436
discrimination, and physical violence among young gay and bisexual men. American Journal
of Public Health, 94, 1200-1203. Doi: 10.2105/AJPH.94.7.1200
Hu, Z., Liu, H., Li, X., Stanton, B., & Chen, X. (2006). HIV-related sexual behaviour among migrants
and non-migrants in a rural area of China: role of rural-to-urban migration. Public Health, 120,
339-345. doi: 10.1016/j.puhe.2005.10.016
Huby, G., Porter, M., & Bury, J. (1998). A matter of methods: perspectives on the role of the British
general practitioner in the care of people with HIV/AIDS. AIDS Care, 10(Suppl.1), S83-S88.
DOI: 10.1080/0954012985024398
Hurley, C.C., & Shea, C.A. (1992). Self-efficacy: Strategy for enhancing diabetes self-care. Diabetes
Educator, 18, 146-150. Doi: 10.1177/014572179201800208
Institute of Medicine (3/31/2011). The health of lesbian, gay, bisexual, and transgender people:
Building a foundation for better understanding. Retrieved from
http://www.iom.edu/~/media/Files/Report%20Files/2011/The-Health-of-Lesbian-Gay-Bisexualand-Transgender-People/LGBT%20Health%202011%20Report%20Brief.pdf
Institute of Social Development Research in China Central Party School, Marie Stopes International
China, and UNAIDS (2009). The China Stigma Index Report. Beijing: UNAIDS and Partners.
Janoff-Bulman, R. (1992). Shattered assumptions: Towards a new psychology of trauma. New York:
Free Press.
Janz, N.K., Champion, V.L., & Strecher, V.J. (2002). The health belief model. In K. Glanz, B.K. Rimer,
& F.M. Lewis (EdS.) Health Behavior and Health Education: Theory, Research, and Practice
(3rd Edition) (pp.49). San Francisco, CA: Jossey-Bass.
Jones, R.H. (2007). Imagined comrades and imaginary protections: identity, community and sexual
risk among men who have sex with men in China. Journal of Homosexuaity, 53: 83-115.
Kalichman, S.C. & Sikkema, K.J. (1994). Psychological sequelae of HIV infection and AIDS: review
of empirical findings. Clinical Psychology Review, 14(7): 611-632. DOI:
10.1016/0272-7358(94)90001-9
Kalichman, S.C. & Weinhardt, L. (2001). Negative affect and sexual risk behavior: comment on
Crepaz and Marks (2001). Health Psychology, 20: 300-301. DOI:
10.1037//0278-6133.20.4.300
Katz, M.H., Schwarcz, S.K., Kellogg, T.A., Klausner, J.D., Dilley, J.W., Gibson, S., & McFarland, W.
(2002). Impact of Highly Active Antiretroviral Treatment on HIV Seroincidence among Men
Who Have Sex with Men: San Francisco. American Journal of Public Health, 92(3): 388-394.
doi: 10.2105/AJPH.92.3.388
Kelly, J.A., Somlai, A.M., DiFranceisco, W.J., Otto-Salaj, L.L., McAuliffe, T.L., Hackl, K.L., Heckman,
T.G., Holtgrave, D.R., & Rompa, D. (2000). Bridging the gap between the science and service
of HIV prevention: Transferring effective research-based HIV prevention interventions to
community AIDS service providers. American Journal of Public Health, 90(7): 1082-1088. doi:
10.2105/AJPH.90.7.1082
437
Kemppainen, J.K., Holzemer, W.L., Nokes, K., Eller, L.S., Corless, I.B., Bunch, E.H., Kirksey, K.M.,
Goodroad, B.K., Portillo, C.J., & Chou, F.Y. (2003). Self-care management of anxiety and fear
in HIV disease. Journal of the Association of Nurses in AIDS Care, 14(2), 21-29. doi:
10.1177/1055329002250958
Kickbusch, I. (1989). Self-care in health promotion. Social Science and Medicine, 29(2): 125-130. doi:
10.1016/0277-9536(89)90160-3
King, M., McKeown, E., Warner, J., Ramsay, A., Johnson, K., Cort, C., Wright, L., Blizard, R., &
Davidson, O. (2003). Mental health and quality of life of gay men and lesbians in England and
Wales. The British Journal of Psychiatry, 183: 552-558. Doi: 10.1192/03-207
Kleinman, A. & Kleinman, J. (1997). Moral transformations of health and suffering in Chinese society.
In A.M. Brandt and P. Rozin (eds). Morality and Health, (pp.101-118). New Yourk: Routledge
Kong, T.S.K. (2011). Chinese male homosexuailties: memba, tongzhi and golden boy. New York:
Routledge.
Kroeger, A. (1983). Anthropological and socio-medical health care research in developing countries.
Social Science & Medicine, 17(3), 147-161. DOI: 10.1016/0277-9536(83)90248-4
Kylma, J., Vehvilainen-Julkunen, K., & Lahdevirta, J. (2001). Hope, despair and hopelessness in
living with HIV/AIDS: a grounded theory study. Journal of Advanced Nursing, 333(6), 764-775.
DOI: 10.1046/j.1365-2648.2001.01712.x
Lalonde, C. (2005). Identity formation and cultural resilience in aboriginal communities. In: R.J. Flynn,
P. Dudding, J. Barber (eds.), Promoting resilience in child welfare (pp.52-72). Ottawa:
University of Ottawa Press
Lau, J.T.F., Cai, W.D., Tsui, H.Y., Chen, L., & Cheng, J.Q. (2009). Psychosocial factors in association
with condom use during commercial sex among migrant male sex workers living in Shenzhen,
Mainland China who serve cross-border Hong Kong male clients. AIDS and Behavior, 13:
939-948. DOI: 10.1007/s10461-009-9591-5
Lau, J.T.F., Choi, K.C., Tsui, H.Y., & Su, X. (2007). Associations between stigmatization toward
HIV-related vulnerable groups and similar attitudes toward people living with HIV/AIDS:
Branches of the same tree? AIDS Care, 19(10), 1230-1240. DOI:
10.1080/09540120701402848
Lau, J.T., Kim, J.H., Lau, M., & Tsui, H.Y. (2004). HIV related behaviours and attitudes among
Chinese men who have sex with men in Hong Kong: a population based study. Sexually
Transmitted Infections, 80: 459-465. Doi: 10.1136/sti.2003.008854
Lau, J.T.F. & Tsui, H.Y. (2005). Discriminatory attitudes towards people living with HIV/AIDS and
associated factors: A population based study in the Chinese general population. Sexually
Transmitted Infections, 81: 113-119. Doi: 10.1136/sti.2004.011767
Lau, J.T.F., Yu, X.N., Mak, W.W.S., Cheng, Y.M., Lv, Y.H. & Zhang, J.X. (2010). Suicidal ideation
among HIV+ former blood and/or plasma donors in rural China. AIDS Care, 22(8): 946-954.
DOI: 10.1080/09540120903511016
438
Leon, G.R., Butcher, J.N., Kleinman, M., Goldberg, A., & Almagor, M. Survivors of the Holocaust and
their children: Current status and adjustment. Journal of Personality and Social Psychology,
1981, 41, 503-516, as cited in Taylor, S.E. (1983). Adjustment to threatening events: A theory
of cognitive adaptation. American Psychologist, 38: 1161-1173.
Leontopoulou, S. (2010). An exploratory study of altruism in Greek children: relations with empathy,
resilience and classroom climate. Psychology, 1(5): 377-385. DOI: 10.4236/psych.2010.15047
Lewis, F.M. (2002). Perspectives on models of interpersonal health behavior. In K. Glanz, B.K. Rimer,
& F.M. Lewis (EdS.), Health Behaivor and Health Education: Theory, Research, and Practice
(3rd Edition) (PP.266). San Francisco, CA: Jossey-Bass.
Li, D.L., Jia, Y.J., Ruan, Y.H., Liu, Y.J., Li, Q.C., Liang, H.Y., Zhou, Z., Luo, F., Zhang, X., Jiang, S.,
Shi, W., Xing, H., & Shao, Y. (2010). Correlates of incident infections for HIV, syphilis, and
hepatitis B virus in a cohort of men who have sex with men in Beijing. AIDS Patient Care and
STDs, 24(9): 595-602. Doi: 10.1089/apc.2010.0083
Li, H.C., Holroyd, E., Lau, J.T.F. (2010). Negotiating homosexual identities: the experiences of men
who have sex with men in Guangzhou. Culture, Health & Sexuality, 12:4, 401-414. DOI:
10.1080/13691050903551721
Li, H.C., Lau, J.T.F., Holroyd, E., & Yi, H. (2010). Socio-cultural facilitators and barriers to condom
use during anal sex among men who have sex with men in Guangzhou, China: an
ethnographic study. AIDS Care, 22 (12): 1481-1486. DOI:10.1080/09540121.2010.482121
Li, L., Liang, L.J., Wu, Z.Y., Lin, C.Q. & Wu, S. (2008). Institutional support for HIV/AIDS care in
China: a multilevel analysis. AIDS Care, 20(10): 1190-1196. doi:
10.1080/09540120801919394
Li, L., Lin, C., Wu, Z., Wu, S., Botheram-Borus, M.J., Detels, R., Jia, M. (2007). Stigmatization and
shame: Consequences of caring for HIV/AIDS patients in China. AIDS Care, 19(2): 258-263.
Doi: 10.1080/09540120600828473
Li, L., Wang, H.M., Ye, X.J., Jiang, M.M., Lou, Q.Y., & Hesketh, T. (2007). The mental health status of
Chinese rural-urban migrant workers: comparison with permanent urban and rural dwellers.
Social Psychiatry and Psychiatric Epidemiology, 42(9): 716-722. DOI:
10.1007/s00127-007-0221-0
Li, X.M., Stanton, B., Fang, X.Y., Lin, D., Mao, R., Wang, J., Cottrell, L., & Harris, C. (2004). HIV/STD
risk behaviors and perceptions among rural-to-urban migrants in China. AIDS Education and
Prevention. 16(6): 538-556. Doi: 10.1521/aeap.16.6.538.53787
Li, X.M., Stanton, B., Fang, X.Y., & Lin, D.H. (2006). Social stigma and mental health among
rural-to-urban migrants in China: a conceptual framework and future research needs. World
Health & Population, 8(3), 14-31.
Li, X., Shi, W., Li, D., Ruan, Y., Jia, Y., Vermund, S.H., Zhang, X.X., Wang, C., Liu, Y., Xing, H., Hong,
K., & Shao, Y. (2008). Predictors of unprotected sex among men who have sex with men in
Beijing, China. Southeast Asian Journal of Tropical Medicine and Public Health, 39(1): 99-108.
439
Li, F.P. (19 September 2010). Li Fangping: the story of Tian Xi—a sufferer getting HIV infected
through blood transfusion safeguarding his legal rights. Retrieved 2 February 2012 from
http://www.epochtimes.com/gb/10/9/20/n3029938.htm
Li, Y.H. (2006). Li Yinhe zixuanji: Xing, aiqing, hunyin ji qita [Li yinhe self selections: Sex, love,
marriage and other issues]. Hohhot, Inner Mongolia: Inner Mongolia University Press.
Li, Y.H. (2006). Regulating male same-sex relationships in the People’s Republic of China. In E.
Jeffreys (Ed.), Sex and Sexuality in China (pp. 82-101). New York: Routledge.
Liamputtong, P. (2009). Qualitative research methods (3rd editioin). Melbourne: Oxford.
Liang, Z. & Ma, Z. (2004). China’s floating population: new evidence from the 2000 census.
Population and Development Review, 30(3), 467-488. Doi: 10.1111/j.1728-4457.2004.00024.x
Liao, M.Z., Kang, D.M., Jiang, B.F., Tao,X.R., Qian, Y.S., Wang,T.Z., Bi, Z.Q., Xiao, Y., Li, C., Wu, P.,
Vermund, S.H., Jia, Y. (2011). Bisexual behavior and infection with HIV and syphilis among
men who have sex with men along the east coast of China. AIDS Patient Care and STDs,
25(11): 683-691. doi: 10.1089/apc.2010.0371.
Liu, X., & Choi, K.H. (2006). Experiences of social discrimination among men who have sex with
men in Shanghai, China. AIDS and Behavior, 10(suppl 1): S25-S33. DOI:
10.1007/s10461-006-9123-5
Liu, J.X. & Choi, K. (2006). Experiences of social discrimination among men who have sex with men
in Shanghai, China. AIDS and Behavior, 10: S25-S33. DOI: 10.1007/s10461-006-9123-5
Liu, H.Q., Zhang, P.Y., Zou, Y.Z., Liu, J.Q., Li, X.Y., Guo, C.F., Yao, F.X., Zhang, X.M., & Xu, H.P..
(1999). Tongxinglian bingren de xinli zhuangkuang jiqi xingcheng de yingxiang yinsu
[Psychological status of homosexual patients and its associated factors]. Zhonghua jingshenke
zazhi [Chinese Journal of Psychiatry], 4: 242-244.
Lin, T.H. & Wu, X.G. (2010). 中国的制度变迁、阶级结构转型和收入不平等：1978-2005 [Institutional
changes, class-structure transformation, and income inequality in China, 1978-2005]. 《社会》
[Society], 6(30), 1-40.
Lincoln, Y.S., & Guba, E.G. (1985). Naturalistic inquiry. New Yourk: Sage.
Lightfoot, M., Song, J., Rotheram-Borus, M.J., & Newman, P. (2005). The influence of partner type
and risk status on the sexual behavior of young men who have sex with men living with
HIV/AIDS. JAIDS Journal of Acquired Immune Deficiency Syndromes, 38: 61-68.
Logie, C. & Gadalla, T.M. (2009). Meta-analysis of health and demographic correlates of stigma
towards people living with HIV. AIDS Care, 21(6): 742-753. DOI:
10.1080/09540120802511877
Lutgendorf, S., Antoni, M.H., Schneiderman, N. & Fletcher, M.A., (1994). Psychosocial counseling to
improve quality of life in HIV infection, Patient Education and Counseling, 24(3), 217-235. doi:
10.1016/0738-3991(94)90066-3
Luthar, S.S. & Cicchetti, D. (2000). The construct of resilience: Implications for interventions and
social policies. Development and Psychopathology, 12, 857-885. PMCID: PMC1903337
440
Luthar, S.S., Cicchetti, D. & Becker, B. (2000). The construct of resilience: A critical evaluation and
guidelines for future work. Child Development, 71(3): 543-562. DOI: 10.1111/1467-8624.00164
Lyubomirsky, S. (2008). The how of happiness: A scientific approach to getting the life you want.
New York: Penguin Press.
Ma, L.J. & Xiang, B. (1998). Native place, migration and the emergence of peasant enclaves in
Beijing. The China Quarterly, 155, 546-581. Doi: 10.1017/S0305741000049997
Ma, X., Zhang, Q., He, X., Sun, W., Yue, H., Chen, S., Raymond, H.F., Li, Y., Xu, M., Du, H., &
McFarland, W. (2007). Trends in prevalence of HIV, syphilis, hepatitis C, hepatitis B, and
sexual lrisk behavior among men who have sex with men: results of 3 consecutive
respondent-driven sampling surveys in Beijing, 2004 through 2006. JAIDS Journal of Acquired
Immune Deficiency Syndromes, 45: 581-587. Doi: 10.1097/QAI.0b013e31811eadbc
Mak, W.S., Poon, C.Y.M., Pun, L.Y.K., & Cheung, S.F. (2007). Meta-analysis of stigma and mental
health. Social Science & Medicine, 65, 245-261. DOI: 10.1016/j.socscimed.2007.03.015
Makadon, H.J., Mayer, K.H., Potter, J., Goldhammer, H. (2008). Fenway Guide to lesbian, gay,
bisexual, and transgender health. Philadelphia: Versa Press.
Mao, L., Kidd, M., Rogers, G., Andrews, G., Newman, C.E., Booth, A., Saltman, D.C., & Kippax, S.C.
(2009). Social factors associated with major depression disorder in homosexually active, gay
men attending general practices in urban Australia. Australian and New Zealand Journal of
Public Health, 33(1): 88-86.
Marchal, B., De Brouwere, V., & Kegels, G. (2005). Viewpoint: HIV/AIDS and the health workforce
crisis: What are the next steps? Tropical Medicine and International Health, 10(4): 300-304.
[PubMed: 15807792]
Marks, G. & Crepaz, N. (2001). HIV-positive men’s sexual practices in the context of self-disclosure
of HIV status. JAIDS Journal of Acquired Immune Deficiency Syndromes, 27: 79-85.
Martin, J.I., & Alessi, E.J. (2010). Stressful events, avoidance coping, and unprotected anal sex
among gay and bisexual men. American Journal of Orthopsychiatry, 80:293-301. Doi:
10.1111/j.1939-0025.2010.01032.x
Marshall, M.N. (1996). Sampling for qualitative research. Family Practice, 13(6): 522-525. doi:
10.1093/fampra/13.6.522
Mason, M. (2010). Sample size and saturation in PhD studies using qualitative interviews. Forum
Qualitative Sozialforschung/Forum: Qualitative Social Research, 11(3), Art.8. Retrieved 12
February 2012 from
http://www.qualitative-research.net/index.php/fqs/rt/printerFriendly/1428/3027
Masten, A.S. (2007). Resilience in developing systems: progress and promise as the fourth wave
rises. Development and Psychopathology, 19: 921-930. DOI: 10.1017/S0954579407000442
Massresources.org (2011). Massachusetts HIV Drug Assistance Program – HDAP. Retrieved from
http://www.massresources.org/hiv-drug-assistance-program.html#CHII
Mathison, S. (1988). Why Triangulate? Educational Researcher, 17: 13-17. DOI:
441
10.3102/0013189x017002013
Mayer, K.H. (2010). Testing a social-cognitive model of HIV transmission risk behaviors in
HIV-infected MSM with and without depression. Health Psychology, 29(2): 215-221. DOI:
10.1037/a0017859
Mayer, K.H., Mimiaga, M.J., VanDerwarker, R., Goldhammer, H., & Bradford, J.B. (2007). Fenway
Community Health’s Model of Integrated, Community-Based LGBT Care, Education, and
Research. In I.H. Meyer & M.E. Northridge (Eds.), the Health of Sexual Minorities—Public
Health Perspective on Lesbian, Gay, Bisexual and Transgender Populations (pp.693-715).
New York: Springer.
McCormick, A.W., Walensky, R.P., Lipsitch, M., Losina, E., Hsu, H., Weinstein, M.C., Paltiel, A.D.,
Freedberg, K.A., & Seage III, G.R.. (2007) The effect of antiretroviral therapy on secondary
transmission of HIV among men who have sex with men. Clinical Infectious Diseases, 44(8):
1115-1122. doi: 10.1096/512816
McCoy, L. (2005). HIV-positive patients and the doctor-patient relationship: perspectives from the
margins. Qualitative Health Research, 15(6): 791-806. doi: 10.1177/1049732305276752
McElroy, A. & Townsend, P.K. (1996). Medical anthropology in ecological perspective. 3rd ed. Boulder,
CO: Westview Press, as cited in H.A. Baer, M. Singer, and I. Susser (Eds.). (2003) Medical
anthropology and the world system (pp.32). Westport, CT: Praeger.
McLeroy, K.R., Bibeau, D., Steckler, A., & Glanz, K. (1988). An ecological perspective on health
promotion programs. Health Education & Behavior, 15(4): 351-377. Doi:
10.1177/109019818801500401
Merzel, C., & D’Afflitti, J. (2003). Reconsidering community-based health promotion: promise,
performance, and potential. American Journal of Public Health, 93: 557-74.
Messeri, P.A., Abramson, D.M., Aidala, A.A., Lee, F. & Lee, G., (2002). The impact of ancillary HIV
services on engagement in medical care in New York City. AIDS Care, 14(Suppl. 1): 15-29. DOI:
10.1080/09540120220149948
Meyer, I.H. (1995). Minority stress and mental health in gay men. Journal of Health and Social
Behavior, 36(1): 38-56. URL: http://www.jstor.org/stable/2137286
Meyer, I.H. (2003). Prejudice, social stress, and mental health in lesbian, gay, and bisexual
populations: conceptual issues and research evidence. Psychological Bulletin, 129(5):
674-697. DOI: 10.1037/0033-2909.129.5.674
Mi, G.D., Zeng, Y.L., Huang, W.L., Zhang L.L., Li, T., Wang, X.D., Yu, J., Rou, K.M., & Wu, Z.Y. (2010).
Chengdu nannan xingxingwei renqun HIV ganranzhe weisheng fuwu liyong xianzhuang
diaocha [A survey on the utilization of AIDS/STD related health services in HIV carriers of
MSM, Chengdu city]. Zhongguo yufang yixue zazhi [Chinese Preventive Medicine], 4:
328-331.
Micollier, E. (2006). Sexualities and HIV/AIDS vulnerability in China, an anthropological perspective.
Sexologies, 15, 191-901.
442
Mills, T.C., Paul, J., Stall, R., Pollack, L., Canchola, J., Chang, J.Y., Moskowitz, J.T., & Catania, J.A.
(2004). Distress and depression in men who have sex with men: The urban men’s health study.
American Journal of Psychiatry, 161: 278-285. Doi: 10.1176/appi.ajp.161.2.278
Mimiaga, M.J., Fair, A.D., Mayer, K.H., Koenen, K., Gortmaker, S., Tetu, A.M., Hobson, J., & Safren,
S.A. (2008). Experiences and sexual behaviors of HIV-infected MSM who acquired HIV in the
context of crystal methamphetamine use. AIDS Education and Prevention, 20(1): 30-41. doi:
10.1521/aeap.2008.20.1.30
Ministry of Health, Singapore, (31 March 2010). UNGASS COUNTRY PROGRESS REPORT
SINGAPORE. Retrieved from
http://aidsdatahub.org/dmdocuments/singapore_2010_country_progress_report_en.pdf
Ministry of Health of the People’s Republic of China. China 2010 UNGASS Country Progress Report
(2008-2009). Retrieved from
http://www.unaids.org/en/dataanalysis/monitoringcountryprogress/2010progressreportssubmit
tedbycountries/china_2010_country_progress_report_en.pdf
Morgan, D.L. (1997). Focus groups as qualitative research. 2
nd
ed., Qualitative Research Methods
Series 16. Thousand Oaks, CA: Sage, as cited in Onwuegbuzie, A.J. & Leech, N.L. (2007). A
call for qualitative power analyses. Quality & Quantity, 41: 105-121. DOI:
10.1007/s11135-005-1098-1
Morin, S.F., Steward, W.T., Charlebois, E.D., Remien, R.H., Pinkerton, S.D., Johnson, M.O.,
Rotheram-Borus, M.J., Lightfoot, M., GoldsteinR.B., Kittel, L., samimy-Muzaffar, F., Weinhardt,
L., Kelly, J., & Chesney, M.A. (2005). Predicting HIV transmission risk among HIV-infected
men who have sex with men: finding from the healthy living project. JAIDS Journal of Acquired
Immune Deficiency Syndromes, 40(2): 226-235.
Morris N.J. (1996). Depression and HIV+ disease: a critical review. Journal of the American
Psychiatric Nurses Association 2, 154-163. DOI: 10.1177/107839039600200504
Morse, J.M. (1994). Designing funded qualitative research. In: N.K. Denzin & Y.S. Lincoln (eds.),
Handbook of Qualitative Research (pp.220-235). Thousand Oaks, CA: Sage.
Morse, J.M. (1995). The significance of saturation. Qualitative Health Research, 5, 147149.
doi:10.1177/104973239500500201
Morse, J.M. (2000). Determining sample size. Qualitative Health Research, 10: 3-5. DOI:
10.1177/104973200129118183
Morse, J.M., Barrett, M., Mayan, M., Olson, K., & Spiers, J. (2002). Verification strategies for
establishing reliability and validity in qualitative research. International Journal of Qualitative
Methods, 1(2), Article 2. Retrieved February 21 2009 from http://www.ualberta.ca/~ijqm
Mustanski, B., Garofalo, R., Herrick, A., & Donenberg, G. (2007). Psychosocial health problems
increase risk for HIV among urban young men who have sex with men: Preliminary evidence
of a syndemic in need of attention. Annals of Behavioral Medicine, 34(1): 37-45. Doi:
10.1007/bf02879919
443
Naroll, R. (1962). Data quality control. New York: Free Press, as cited in H.R. Bernard (1995),
Research Methods in Anthropology—Qualitative and Quantitative Approaches (pp.140).
Walnut Creek, CA: Altamira.
Nicholas, P.K., Kemppainen, J.K., Holzemer, W.L., Nokes, K.M., Sanzero Eller, L., Corless, I.B.,
Haugen Bunch, E., Bain, C.A., Kirksey, K.M., Davis, S.M., & Goodroad, B.K. (2002). Self-care
management for neuropathy in HIV disease. AIDS Care, 14(6), 763-771. doi:
10.1080/0954012021000031831
Norris, F.H., Stevens, S.P., Pfefferbaum, B., Wyche, K.F., & Pfefferbaum, R.L. (2008). Community
resilience as a metaphor, theory, set of capacities, and strategy for disaster readiness.
American Journal of Community Psychology, 41: 127-150. Doi: 10.1007/s10464-007-9156-6
Norris, T. & Pittman, M. (2000). The healthy communities movement and the coalition for healthier
cities and communities. Public Health Reports, 115: 118-124.
Nyblade, L.C. (2006). Measuring HIV stigma: Existing knowledge and gaps. Psychology, Health &
Medicine. Special Issue: Perspectives on health-related stigma, 11(3), 335-345. Doi:
10.1080/13548500600595178
O’Cleirgh, C. & Safren, S. (2008). Optimizing the effects of stress management intervention in HIV.
Health Psychology, 27(3): 297-301. Doi: 10.1037/a0012607
O’Cleirigh, C., Hart, T.A., & James, C.A. (2008). HIV and Anxiety. In M.J. Zvolensky, & J.A. Smits
(eds.), Anxiety in Health Behaviors and Physical Illness (pp. 317-340). New York: Springer.
Olsson, C., Bond, L., Burns, J.M., Vella-Broderick, D.A., & Sawyer, S.M. (2003).Adolescent
resilience: A concept analysis. Journal of Adolescence, 26: 1-11. [PubMed: 12550818]
O’Cleirigh, C., Mimiaga, M., Safren, S.A., et al (2010) Synergistic effects of psychosocial and
substance use problems on increased sexual transmission risk among HIV-infected men who
have sex with men. XVIII International AIDS Conference 2010, Vienna, as cited in Safren, S.A.,
Blashill, A.J., & O’Cleirigh (2011). Promoting the sexual health of MSM in the context of
comorbid mental health problems. AIDS and Behavior, 15(suppl 1): S30-S34. DOI:
10.1007/s10461-011-9898-x
Onwuegbuzie, A.J. & Leech, N.L. (2007). A call for qualitative power analyses. Quality & Quantity, 41:
105-121. DOI: 10.1007/s11135-005-1098-1
Onwuegbuzie, A.J. (2003). Effect sizes in qualitative research: a prolegomenon. Quality & Quantity:
Quality & Quantity, 37(4): 393-409. DOI: 10.1023/A:1027379223537
Onwuegbuzie, A.J. & Leech, N.L., (2010). Generalization practices in qualitative research: a mixed
methods case study. Quality & Quantity, 44: 88-892. DOI: 10.1007/s11135-009-9241-z
Office of the State Council Working Committee on AIDS, China (December, 2005). Progress on
Implementing UNGASS Declaration of Commitment in China 2005. Retrieved from
http://data.unaids.org/pub/Report/2006/2006_country_progress_report_china_en.pdf
Oram, B. (1992). The personal meaning of chronic illness within the context of everyday life: A case
study of the experiences of people with insulin-dependent diabetes. Unpublished doctoral
444
dissertation, University of Toronto, Toronto, Canada.
Ottawa Charter for Health Promotion, First International Conference on Health Promotion, Ottawa,
21 Novermber 1986 – WHO/HPR/HEP/95.1 Retrieved from
http://www.who.int/hpr/NPH/docs/ottawa_charter_hp.pdf
Pakenham, K.I., Dadds, M.R., & Terry, D.J. (1994). Relationships between adjustment to HIV and
both social support and coping. Journal of Consulting and Clinical Psychology, 62(6),
1194-1203. doi: 10.1037/0022-006X.62.6.1194
Parker, R. & Aggleton, P. (2003). HIV and AIDS-related stigma and discrimination: a conceptual
framework and implication for action. Social Science and Medicine, 57(1): 13-24. doi:
10.1016/S0277-9536(02)00304-0
Parker, R., Aggleton, P., Attawell, K., Pulerwitz, J., & Brown, L. (2002). Sexual health Exchange
HIV/AIDS-related stigma and discrimination: a conceptual framework and an agenda for action.
Washington, D.C., Population Council Horizons Project. retrieved 12 January 2012 from
http://pdf.usaid.gov/pdf_docs/Pnacq832.pdf
Parker, R. (2002). The global HIV/AIDS pandemic, structural inequalities, and the politics of
international health. American Journal of Public Health, 92(3):343-346.
Panter-Brick, C., Clarke, S.E., Lomas, H., Pinder, M., & Lindsay, S.W. (2006). Culturally compelling
strategies for behaviour change: A social ecology model and case study in malaria prevention.
Social Science & Medicine, 62: 2810-2825. doi: 10.1016/j.socscimed.2005.10.009
Parsons, J.T., Kutnick, A.H., Halkitis, P.N., Punzalan, J.C., & Carbonari, J.P. (2005). Sexual risk
behaviors and substance use among alcohol abusing HIV-positive men who have sex with
men. Journal of Psychoactive Drugs, 37(1): 27-36. DOI: 10.1080/02791072.2005.10399746
Parsons, J.T., Schrimshaw, E.W., Wolitski, R.J., Halkitis, P.N., Purcell, D.W., Hoff, C.C., Gomez, C.A.
(2005). Sexual harm reduction practices of HIV-seropositive gay and bisexual men:
serosorting, strategic positioning, and withdrawal before ejaculation. AIDS, 19 (Suppl 1):
S13-S25.
Parsons, J.T., Severino, J., Nanin, J., Punzalan, J.C., von Sternberg, K., Missildine, W., & Frost, D.
(2006). Positive, negative, unknown: assumptions of HIV status among HIV positive men who
have sex with men. AIDS Education and Prevention, 18: 139-149. [PubMed: 16649959]
Pessoa, L. (2008). On the relationship between emotion and cognition. Nature Reviews
Neuroscience, 9:148-158. Doi: 10.1038/nrn2317
Pope, C., Ziebland, S., & Mays, N. (2000). Qualitative research in health care: analyzing qualitative
data. BMJ British Medical Journal, 320: 114-116. doi: 10.1136/bmj.320.7227.114
Poppen, P.J., Reisen, C.A., Zea, M.C., Bianchi, F.T. and Echeverry, J.J. (2005). Serostatus
disclosure, seroconcordance, partner relationship, and unprotected anal intercourse among
HIV-positive Latino men who have sex with men. AIDS Education and Prevention, 17(3),
227-37.
Psychiatric Department of Chinese Medical Association (2001:1). Diagnostic criteria of mental
445
disorders (CCMD-3). Jinan: Scientific and Technological Publishing House of Shandong.
Poppen, P.J., Reisen, C.A., Zea, M.C., Bianchi, F.T., & Echeverry, J.J. (2004). Predictors of
unprotected anal intercourse among HIV-positive Latino gay and bisexual men. AIDS and
Behavior, 8(4): 379-389. DOI: 10.1007/s10461-004-7322-5
Purcell, D.W., Parsons J.T., Halkitis, P.N., Mizuno, Y., & Woods, W.J. (2001). Substance use and
sexual transmission risk behavior of HIV-positive men who have sex with men. Journal of
Substance Abuse, 13: 185-200. doi: 10.1016/S0899-3289(10)00072-4
Rabkin J.G., Williams J.B.W., Neugebauer R., Remien R.H. & Goetz R. (1990). Maintenance of hope
in HIV-spectrum homosexual men. American Journal of Psychiatry, 147, 1322-1326.
Rausch, D., Dieffenbach, C., Cheever, L., & Fenton, K.A. (2011). Towards a more coordinated
federal response to improving HIV prevention and sexual health among men who have sex
with men. AIDS and Behavior, 15: S107-S111. DOI: 10.1007/s10461-011-9908-z
Raveis, V.H., Siegel K. & Gorey E. (1998). Factors associated with HIV-infected women’s delay in
seeking medical care. AIDS Care, 10(5), 549-561. DOI:10.1080/09540129848415
Red ribbon centre-UNAIDS collaborating centre for technical support, department of health, Hong
Kong, (2008). HIV Services Directory. Retrieved from
http://www.info.gov.hk/aids/english/publications/g205index_e.htm
Reidpath, D.D. & Chan, K.Y. (2005). A method for the quantitative analysis of the layering of
HIV-related stigma. AIDS Care, 17: 425-432. Doi: 10.1080/09540120412331319769
Reisner, S.L., Mimiage, M.J., Safren, S.A., & Mayer, K.H. (2009). Stressful or traumatic life events,
post-traumatic stress disorder (PTSD) symptoms, and HIV sexual risk taking among men who
have sex with men. AIDS Care, 21: 1481-9. DOI: 10.1080/09540120902893258
Remien, R.H., Halkitis, P.N., O’Leary, A., Wolitski, R.J., & Gomez, C.A. (2005). Risk perception and
sexual risk behaviors among HIV-positive men on antiretroviral therapy. AIDS and Behavior,
9(2): 167-176. DOI: 10.1007/s10461-005-3898-7
Richardson, E.H. & Turner, B.S. (2001). Sexual, intimate or reproductive citizenship? Citizenship
Studies, 5(3): 329-338. DOI: 10.1080/1362102012008528 9
Rimer, B.K. (2002). Perspectives on intrapersonal theories of health behavior (pp.47). In K. Glanz,
B.K. Rimer, & F.M. Lewis (Eds.), Health Behavior and Health Education: Theory, Research,
and Practice (3rd Edition) (pp. 144-159). San Francisco, CA: Jossey-Bass.
Robinson, B.B.E., Bockting, W.O., Rosser, B.R.S., Miner, M., & Coleman, E. (2002). The Sexual
Health Model: application of a sexological approach to HIV prevention. Health Education
Research, 17 (1): 43-57. doi: 10.1093/her/17.1.43
Rodgers, B.L. & Cowles, K.V. (1993). The qualitative research audit trail: a complex collection of
documentation. Research in Nursing & Health, 16(3): 219-226. DOI: 10.1002/nur.4770160309
Rofel, L. (2007). Desiring China—Experiments in neoliberalism, sexuality, and public culture.
Durham and London: Duke University Press.
Rogers, G., Curry, M., Oddy, J., Pratt, N., Beilby, J. & Wilkinson, D. (2003). Depressive disorders and
446
unprotected casual anal sex among Australian homosexually active men in primary care. HIV
Medicine, 4(3): 271-275. DOI: 10.1046/j.1468-1293.2003.00155.x
Rosser, B.R.S., Coleman, E., & Ohmans, P. (1993). Safer sex maintenance and reduction of unsafe
sex among homosexually active men: a new therapeutic approach. Health Education
Research, 8(1): 19-34. doi: 10.1093/her/8.1.19
Rosser, B.R.S., Hatfield, L.A., Miner, M.H., Ghiselli, M.E., Lee, B.R., Welles, S.L., & The Positive
Connections Team (2010). Effects of a behavioral intervention to reduce serodiscordant
unsafe sex among HIV positive men who have sex with men: the Positive Connections
randomized controlled trial study. Journal of Behavioral Medicine, 33(2): 147-158. DOI:
10.1007/s10865-009-9244-1
Rosser, B. R. & Horvath, K. J. (2008). Predictors of success in implementing HIV prevention in rural
America: A state-level structural factor analysis of HIV prevention targeting men who have sex
with men. AIDS and Behavior, 12(2): 169. DOI: 10.1007/s10461-008-9366-4
Rozycki, E.G. (2006). Behavior, Action, Pattern and Structure. Retrieved 20 December 2011 from
http://www.newfoundations.com/MiscExercises/BehaviorAction.html
Roy, C.M. & Cain, R. (2001). The involvement of people living with HIV/AIDS in community-based
organizations: contributions and constraints. AIDS Care, 13(4): 421-432. doi:
10.1080/09540120057950
Ruan, S., Yang, H., Zhu, Y., Wang, M., Ma, Y., Zhao, J., McFarland, W., & Raymond, H.F. (2009).
Rising HIV prevalence among married and unmarried men who have sex with men: Jinan,
China. AIDS and Behavior, 13: 671-676. DOI: 10.1007/s10461-009-9567-5
Rutter, M. (1990). Psychological resilience and protective mechanisms. In: Rolf, J.; Masten, AS;
Cicchetti, D.; Nuchterlein, KH; & Weintraub, S., (eds.), Risk and Protective Factors in the
Development of Psychopathology (pp.181-214). New York: Cambridge University Press.
Safren, S.A., Traeger, L., Skeer, M.R., O’Cleirigh, C., Meade, C.S., Covahey, C., Mayer, K.H. (2010).
Testing a social-cognitive model of HIV transmission risk behaviors in HIV-infected MSM with
and without depression. Health Psychology, 29(2): 215-221. DOI: 10.1037/a0017859
Sallis, J.F., Owen, N., & Fisher, E.B. (2008). Chapter 20 Ecological models of health behavior. In K.
Glanz, B.K. Rimer, & K. Viswanath (Eds.), Health Behavior and Health Education: Theory,
Research, and Practice (4th Edition) (pp.465-485). San Francisco, CA: Jossey-Bass.
Sandfort, T.G.M., de Graaf, R., V. Bijl, R., & Schnabel, P. (2001). Same-Sex Sexual Behavior and
Psychiatric Disorders: Findings from the Netherlands Mental Health Survey and Incidence
Study (NEMESIS). Archives of General Psychiatry, 2001; 58(1):85-91. Retrieved from
http://projekte.sozialnetz.de/homosexualitaet/medien/studie_sandfort.pdf
Scambler, G. (2009). Health-related stigma. Sociology of Health & Illness, 31(3), 441-455. Doi:
10.1111/j.1467-9566.2009.01161.x
Scambler, G. (1989) Epilepsy. London: Tavistock, as cited in Steward, W., Herek, G., Ramakrishna, J.,
Bharat, S., Chandy, S., Wrubel, J. and Ekstrand, M. (2008) HIV-related stigma: adapting a
447
theoretical framework for use in India, Social Science and Medicine, 67(8), 1225-35. Doi:
10.1016/j.socscimed:2008.05.032
Schellenberg, E.G., Keil, J.M. and Bem, S.L. (1995). ‘Innocent victims’ of AIDS: Identifying the
subtext. Journal of Applied Social Psychology, 25: 1790-1800. Doi:
10.1111/j.1559-1916.1995.tb01818.x
Schutz, A. (1971). On Multiple Realities. In Collected Papers. Vol. 1: The Problem of Social Reality
(pp.207-259). The Hague: Martinus Nijhoff, as cited in Good, B. (1994), Medicine, rationality,
and experience—an anthropological perspective (pp.61). Cambridge: Cambridge University
Press.
Schutz, M., Godin, G., Kok, G., Vezina-Im, L-A, Naccache, H., Otis, J., & the MAYA Study Group
(2011). Determinants of condom use among HIV positive men who have sex with men.
International Journal of STD & AIDS, 22: 391-397. DOI: 10.1258/ijsa.2011.010205
Semple, S.J., Patterson, T.L., & Grant, I. (2000). Partner type and sexual risk behavior among HIV
positive gay and bisexual men: Social cognitive correlates. AIDS Education and Prevention,
12(4), 340-356.
Sheer, L., Lampe, F., Fisher, M., Authur, G., Anderson, J., Zetler, S., Johnson, M., Edwards, S.,
Harding, R. (2008). Suicidal ideation in UK HIV clinic attenders. AIDS 22(13): 1651-1658. DOI:
10.1097/QAD.0b013e32830c4804
Sheldon, K.M. & Lyubomirsky, S. (2004). Achieving sustainable new happiness: prospects, practices,
and prescriptions. In A. Linley & S. Joseph (Eds.), Positive psychology in practice (pp.
127-145). Hoboken, NJ: John Wiley & Sons.
Sheldon, K.M. & Lyubomirsky, S. (2006). Achieving sustainable gains in happiness: change your
actions, not your circumstances. Journal of Happiness studies, 7:55-86. DOI:
10.1007/s10902-005-0868-8
Shen, Q.J., Lu, Y.W., Hu, C.Y., Deng, X.M., Gao, H., Huang, X.Q., Niu, E.H. (1998). A preliminary
study of the mental health of young migrant workers in Shenzhen. Psychiatry and Clinical
Neurosciences, 52(suppl): 370-373.
Shenzhen CDC (2010). The HIV/AIDS Epidemic Analysis Report of Shenzhen City in 2010.
Shenzhen: Shenzhen CDC.
Shenzhen City Administration of Social Insurance Fund (2008, February 25). 《深圳市社会医疗保险
办法》解读 [The interpretation of Shenzhen Social health insurance options], retrieved 21 April
2009 from http://www.szsi.gov.cn/sbjxxgk/zcfggfxwj/zcjd/200812/t20081215_1553.htm
Shenzhen City Government General Office (14 September 2011). the 12th Five years Shenzhen City
Population Development Plan (深圳市人口发展“十二五”规划). Retrieved 30 October 2011 from
http://www.sz.gov.cn/zfgb/2011/gb758/201110/t20111012_1738467.htm
Shenzhen Bureau of Statistics (2011). The Statistical Communiqué on the 2010 National Economic
and Social Development of the City of Shenzhen. Retrieved 25 April 2011 from
http://www.sztj.com/main/xxgk/tjsj/tjgb/gmjjhshfzgb/201104257181.shtml
448
Sherer, R., Stieglitz, K., Narra, J., Jasek, J., Green, L., Moore B., Shott, S., & Cohen, M. (2002). HIV
multidisciplinary teams work: Support services improve access to and retention in HIV primary
care. AIDS Care, 14(Suppl.1), S31-S44. DOI: 10.1080/09540120220149975
Shweder, R.A., & Miller, J.G. (1985). The social construction of the person: How is it possible? In K.J.
Kenneth & K.E. Davis (Eds.), the social construction of the person (pp. 41-69). New York:
Springer-Verlag, as cited in Chiu, C.Y., Dweck, C.S., Tong, J.Y.Y., & Fu, J.H.Y. (1997). Implicit
theories and conceptions of morality. Journal of Personality and Social Psychology, 73(5):
923-940. doi: 10.1037/0022-3514.73.5.923
Siegel, K. & Schrimshaw, E.W. (2000). Coping with negative emotions: the cognitive strategies of
HIV-infected gay/bisexual men. Journal of Health Psychology, 5(4): 517-530. Doi:
10.1177/135910530000500409
Simon Rosser, B. R., Horvath, K. J., Hatfield, L. A., Peterson, J. L., Jacoby, S., Stately A. (2008).
Predictors of HIV disclosure to secondary partners and sexual risk behavior among a high-risk
sample of HIV-positive MSM: results from six epicenters in the US. AIDS Care, 20, 925-30.
DOI:10.1080/09540120701767265
Sin, N.L. & Lyubomirsky, S. (2009). Enhancing well-being and alleviating depressive symptoms with
positive psychology interventions: a practice-friendly meta-analysis. Journal of Clinical
Psychology, 65(5), 467-487. DOI: 10.1002/jclp.20593
Singer, M. (1994). Aids and the health crisis of the U.S. urban poor: the perspective of critical
medical anthropology. Social Science & Medicine, 39(7): 931-948. doi:
10.1016/0277-9536(94)90205-4
Singer, M. (1996). Farewell to adaptationism: unnatural selection and the politics of biology. Medical
Anthropology Quarterly, 10(4): 496-515. URL: http://www.jstor.org/stable/648657
Singer, M.C. & Clair, S. (2003). Syndemics and public health: Reconceptualizing disease in
bio-social context. Medical Anthropology Quarterly, 17(4): 423-441. DOI:
10.1525/maq.2003.17.4.423
Singer, M.C., Erickson, P.I., Badiane, L., Diaz, R., Ortiz, D., Abraham, T., Nicolaysen, A.M. (2006).
Syndemics, sex and the city: Understanding sexually transmitted diseases in social and
cultural context. Social Science and Medicine, 63: 2010-2021. doi:
10.1016/j.socscimed.2006.05.012
Skinta, M., Paul, J., Murphy, J. & Dilley, J.W. (2009). Differences in thoughts associated with
unprotected anal intercourse between HIV+ and HIV- MSM. Retrieved 10 September 2011
from http://www.ucsf-ahp.org/HTML2rev3/pdfs/SkintaHIVPrev2009.pdf
Smith, C.J. (2005). Social geography of sexually transmitted diseases in China: Exploring the role of
migration and urbanization. Asia Pacific Viewpoint, 46(1): 65-80. DOI:
10.1111/j.1467-8373.2005.00260.x
Smith, C.J. & Yang, X. (2005). Examining the connection between temporary migratioin and the
spread of STDs and HIV/AIDS in China. The China Review, 5(1), 111-139.
449
Stall, R., Mills, T.C., Williamson, J., Hart, T., Greenwood, G., Paul, J., Pollack, L., Binson, D., Osmond,
D., & Catania, J.A. (2003). Association of co-occurring psychosocial health problems and
increased vulnerability to HIV/AIDS among urban men who have sex with men. American
Journal of Public Health, 93(6): 939-42. Doi: 10.2105/AJPH.93.6.939
State Council of the People’s Republic of China (2006). Decree of the State Council of the People’s
Republic of China No.457—“Regulations on AIDS Prevention and Treatment”. Retrieved 12
September 2011 from
http://www.ilo.org/wcmsp5/groups/public/---ed_protect/---protrav/---ilo_aids/documents/legaldo
cument/wcms_113144.pdf
State Council AIDS Working Committee Office & the United Nations Theme Group on AIDS in China
(2004). The Joint Assessment of China’s AIDS Prevention and Control was released in 2004.
Retrieved 28 January 2012 from
http://www.moh.gov.cn/publicfiles/business/htmlfiles/mohyzs/pzcxx/200804/32041.htm
State Department of People’s Republic of China (1998). Regulations of Social Organizations
Registration. Retrieved from
http://www.mca.gov.cn/article/zwgk/fvfg/mjzzgl/200709/20070900001725.shtml
Stearns, P. (2001) Consumerism in World History: The global transformation of desire. London:
Routledge.
Stearns, S., Bernard, S., Fasick, S., Schwarts, R., Konrad, T., Ory, M., & DeFriese, G.H. (2000). The
economic implications of self care: The effect of lifestyle, functional adaptations, and medical
self care among a national sample of Medicare beneficiaries. American Journal of Public
Health, 90(10), 1608-1612. DOI: 10.2105/AJPH.90.10.1608
Steward, W., Herek, G., Ramakrishna, J., Bharat, S., Chandy, S., Wrubel, J. and Ekstrand, M. (2008)
HIV-related stigma: adapting a theoretical framework for use in India, Social Science and
Medicine, 67, 8, 1225-35. Doi: 10.1016/j.socscimed:2008.05.032
Song, Y.Q. 《保险行规形同虚设 艾滋病患获赔仍无望》. 每日经济新闻 2009-12-02. [Insurance line
regulation useless, AIDS patients with compensated still hopeless. Daily Economic News, 2
December 2009] Retrieved August 15, 2011, from
http://www.nbd.com.cn/newshtml/20091202/20091202041309450.html
Sontag, S. (1990). Illness as metaphor and AIDS and its metaphors. New York: Farrar, Straus and
Giroux
Sutherland, S. (1989). "Consciousness". Macmillan Dictionary of Psychology. Macmillan. ISBN
9780333388297.
Taylor, S.E. (1983). Adjustment to threatening events: A theory of cognitive adaptation. American
Psychologist, 38: 1161-1173.
Taylor, S.E., Helgeson, V.S., Reed, G.M., & Skokan, L.A. (1991). Self-generated feelings of control
and adjustment to physical illness. Journal of Social Issues, 47(4), 91-109. Doi:
10.111/j.1540-4560.1991.tb01836.x
450
The Australia Government (2008). UNGASS Country Progress Report Australia. Retrieved from
http://www.unaids.org/en/dataanalysis/monitoringcountryprogress/2010progressreportssubmit
tedbycountries/2008progressreportssubmittedbycountries/australia_2008_country_progress_r
eport_en.pdf
The Chinese people's political consultative conference (CPPCC) Network (December 2, 2011).
Member of the CPPCC National Committee called on the medical staff should take the lead in
eliminating discrimination against AIDS. Retrieved from
http://www.cppcc.gov.cn/2011/12/02/ARTI1322789313190244.shtml
The Netherlands Government (2010). UNGASS Country Progress Report. Retrieved from
http://www.unaids.org/en/dataanalysis/monitoringcountryprogress/2010progressreportssubmit
tedbycountries/netherlands_2010_country_progress_report_en.pdf
Thorne, S.E., Nyhlin, K.T., & Paterson, B.L. (2000). Attitudes toward patient expertise in chronic
illness. International Journal of Nursing Studies, 37(4), 303-311. doi:
10.1016/S0020-7489(00)00007-9
Thorne, S., Paterson, B., & Russell, C. (2003). The structure of everyday self-care decision making
in chronic illness. Qualitative Health Research, 13(10), 1337-1352. doi:
10.1177/1049732303258039
Tong, A., Sainsbury, p., & Craig, J. (2007). Consolidated criteria for reporting qualitative research
(COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality
in Health Care, 19(6): 349-357. DOI: 10.1093/intqhc/mzm042
Tongco, M. D. C. (2007). Purposive sampling as a tool for informant selection. Ethnobotany
Research & Applications, 5: 147-158.
Traube, D.E., Holloway, I.W., & Smith, L. (2011). Theory development for HIV behavioral health:
empirical validation of behavior health models specific to HIV risk. AIDS Care, 23(6), 663-670.
DOI: 10.1080/09540121.2010.532532
Traupmann, J. & Hatfield, E. (1981). Love and its effect on mental and physical health. Retrieved
from http://www2.hawaii.edu/~elaineh/55.pdf
UNAIDS (February 2001). UNAIDS Technical Update: Population Mobility and AIDS. (UNAIDS Best
Practice Collection) Retrieved from
http://data.unaids.org/publications/irc-pub02/jc513-popmob-tu_en.pdf
UNAIDS (2007). UNAIDS Policy Brief: The Greater Involvement of People Living with HIV (GIPA).
Geneva: UNAIDS. Retrieved 6 January 2012 from
http://data.unaids.org/pub/Report/2007/JC1299-PolicyBrief-GIPA_en.pdf
UNAIDS (2010). Global report: UNAIDS report on the global AIDS epidemic 2010. WHO Library
Cataloguing-in-Publication Data “UNAIDS/10.11E∣JC1958E”.
UNAIDS/WHO (2009). AIDS Epidemic Update 2009. Geneva, Switzerland: UNAIDS/WHO
UNESCO/UNAIDS (June 2000). Migrant Populations and HIV/AIDS—The development and
implementation of programmes: theory, methodology and practices. (UNAIDS Best
451
Practice—Key Material) retrieved from
http://data.unaids.org/publications/IRC-pub01/jc397-migrantpop_en.pdf
Unger, A., Welz, T., Haran, D. (July 2002). The impact of HIV/AIDS on healthcare staff at a rural
South African hospital, 1990-2001; Paper presented at the XIV International AIDS Conference;
Barcelona, Spain, as cited in Li, L., Lin, C., Wu, Z., Wu, S., Botheram-Borus, M.J., Detels, R.,
Jia, M. (2007). Stigmatization and shame: Consequences of caring for HIV/AIDS patients in
China. AIDS Care, 19(2): 258-263. Doi: 10.1080/09540120600828473
Uphold, C.R. & Mkanta, W.N. (2005). Use of health care services among persons living with HIV
infection: State of the science and future directions. AIDS Patient Care and STDs, 19(8):
473-485.
van Brakel, W.H. (2006). Measuring health-related stigma—A literature review. Psychology, Health &
Medicine, 11(3), 307-334. DOI: 10.1080/13548500600595160
Van de Ven, P., Kippax, S., Crawford, J., Rawstorne, P., Prestage, G., Grulich, A., & Murphy, D.
(2002). In a minority of gay men, sexual risk practice indicates strategic positioning for
perceived risk reduction rather than unbridled sex. AIDS Care, 14: 471-480. DOI:
10.1080/09540120208629666
van Kesteren, N.M.C., Hospers, H.J., Kok, G. (2007). Sexual risk behavior among HIV-positive men
who have sex with men: A literature review. Patient Education and Counseling, 65(1): 5-20. doi:
10.1016/j.pec.2006.09.003
van Kesteren, N.M.C., Hospers, H.J., Kok, G., & van Empelen, P. (2005) Sexuality and sexual risk
behavior in HIV positive men who have sex with men. Qualitative Health Research, 15(2),
145-168. doi:10.1177/1049732304270817
van Gulick, R. (2004). "Consciousness". Stanford Encyclopedia of Philosophy. Retrieved from
http://plato.stanford.edu/entries/consciousness/
van Meijl, T. (2008). Culture and identity in anthropology: Reflections on ‘unity’ and ‘uncertainty’ in
the dialogical self. International Journal for Dialogical Science, 3(1): 165-190.
Walker, L.J. & Moran, T.J. (1991). Moral reasoning in a communist Chinese society. Journal of Moral
Education, 20(2): 139-156. Doi: 10.1080/0305724910200203
Walster, E., Berscheid, E., & Walster, G.W. (1976). New directions in equity research. Reprinted from:
Advances in Experimental Social Psychology, 9: 1-42. This article originally appeared in
Journal of Personality and Social Psychology, 1973, 25(2): 151-176. Retrieved from
http://www.elainehatfield.com/36.pdf
Wang, F., Zuo, X., & Ruan, D. (2002). Rural migrants in Shanghai: living under the shadow of
socialism. International Migration Review, 36(2): 520-545. DOI:
10.1111/j.1747-7379.2002.tb00091.x
Wang, L., Wang, N., Wang, L.Y., Li, D.M., Jia, M.H., Gao, X., Qu, S., Qin, Q., Wang, Y., Kumi, S.
(2009). The 2007 estimates for people at risk for and living with HIV in China: progress and
challenges. JAIDS Journal of Acquired Immune Deficiency Syndromes, 50(4), 414-418. doi:
452
10.1097/QAI.0b013e3181958530
Wang, J., Lin, X., Wu, W., & Qu, W. (2005). Youchang xianxuezhe de qingxu zhang’ai [The mood
state of paid blood donors with HIV and its relation to stress and cognitive appraisal]. Xinli
xuebao [Acta Psychologica Sinica], 37: 106–112.
Weinberg, D. (2007). Weinberg, Darin. "Social Control." In G. Ritzer, (Ed), Blackwell Encyclopedia of
Sociology. Blackwell Publishing. Retrieved 31 March 2009 from Blackwell Reference Online.
Weinman, J., & Petrie, K. (1997) Illness perceptions: A new paradigm for psychosomatics? Journal of
Psychosomatic Research, 42(2), 113-116.
Weinman, J., Petrie, K.J., Morris, R.M., & Horne, R. (1996). The illness perception questionnaire: A
new method for assessing the cognitive representation of illness. Psychology and Health, 11,
43105. DOI: 10.1080/08870449608400270
Weisaeth, L. (1995). Disaster: Risk and prevention intervention. In B. Raphael & G. Burrows (Eds.),
Handbook of preventative psychiatry (pp.301-332). Amsterdam, the Netherlands: Elsevier
North-Holland.
Wen, Jiaobao (July 2003). Joint Efforts for Effective Prevention and Control of HIV/AIDS. Beijing.
Cited in Shen, Jie and Yu, Dongbao (2005). Governmental policies on HIV infection in China.
Cell Research, 15 (11-12): 903-907.
Whetten, K., Reif, S., Whetten, R., & Murphy-McMillan, L.K. (2008). Trauma, mental health, distrust,
and stigma among HIV-positive persons: implications for effective care. Psychosomatic
Medicine, 70: 531-538. DOI: 10.097/PSY.0b013e31817749dc
Wilson, J.P., & Raphael, B. (1993). The international handbook of traumatic stress syndromes. New
York: Plenum.
Wilson, J.P. (1995). Traumatic events and PTSD prevention. In B. Raphael & E.D. Barrows (Eds.),
the handbook of preventative psychiatry (pp. 281-296). Amsterdam, the Netherlands: Elsevier
North-Holland.
Wilson, P.A., & Yoshikawa, H. (2004). Experiences of and responses to social discrimination among
Asian and Pacific Islander gay men: Their relationship to HIV risk. AIDS Education and
Prevention, 16, 68-83.
Williams, P., Narciso, L., Browne, G., Roberts, J., Weir, R., & Gafni, A. (2005). The prevalence,
correlates, and costs of depression in people living with HIV/AIDS in Ontario: Implications for
service directions. AIDS Education and Prevention, 17(2), 119-130. doi:
10.1521/aeap.17.3.119.62903
Williams, P., Narciso, L., Browne, G., Roberts, J., Weir, R., Gafni, A. (2005). Characteristics of people
living with HIV who use community-based services in Ontario, Canada: Implications for service
providers. Journal of the Association of Nurses in AIDS Care, 16(4): 50-63. doi:
10.1016/j.jana.2005.05.004
Williams, J.K., Wyatt, G.E., Resell, J., Peterson, J., and Asuan-O’Brien, A. (2004). Psychosocial
issues among gay- and non-gay-identifying HIV-seropositive African American and Latino
453
MSM. Cultural Diversity and Ethnic Minority Psychology, 10(3), 268-286. DOI:
10.1037/1099-9809.10.3.268
Wise, M. & Signal, L. (2000). Health promotion development in Australia and New Zealand. Health
Promotion International, 15(3): 237-248. doi: 10.1093/heapro/15.3.237
Wolf, Z.R. (2003). Exploring the audit trail for qualitative investigations. Nurse Educator, 28(4):
175-178.
Wong, F.Y., Huang, Z.J., He, N., Smith, B.D., Ding, Y., Fu, C., & Young, D. (2008). HIV risks among
gay-and non-gay-identified migrant money boys in Shanghai, China. AIDS Care, 20: 170-80.
DOI: 10.1080/09540120701534707
Wong, C.F., Kipke, M.D., Weiss, G., & McDavitt, B. (2010). The impact of recent stressful
experiences on HIV risk related behaviors. Journal of Adolescence, 33(3):463-75. Doi:
10.1016/j.adolescence.2009.06.004
Wong, D.F.K., He, X.S., Leung, G., Lau, Y., Chang, Y.L. (2008). Mental health of migrant workers in
China: prevalence and correlates. Social Psychiatry and Psychiatric Epidemiology, 43:
483-489. DOI: 10.1007/s00127-008-0341-1
Wong, D.F.K. (2008). Differential impacts of stressful life events and social support on the mental
health of mainland Chinese immigrant and local youth in Hong Kong: A resilience perspective.
British Journal of Social Work, 38: 236-252. doi: 10.1093/bjsw/bc1344
Wong, D.F.K., Li, C.Y.,& Song, H.X. (2007). Rural migrant workers in urban China: living a
marginalized life. International Journal of Social Welfare, 16: 32-40. DOI:
10.1111/j.1468-2397.2007.00475.x
Wong, W.C.W., & Kong, T.S.K. (2007). To determine factors in an initiation of a same-sex
relationship in rural China: Using ethnographic decision model. AIDS Care, 19(7), 850-857.
DOI: 10.1080/095401200601086808
Wulfert, E. & Wan, C.K. (1993). Condom use: A self-efficacy model. Health Psychology, 12(5):
346-353. DOI: 10.1037/0278-6133.12.5.346
Wulfert, E., Safren, S.A., Brown, I., & Wan, C.K. (1999). Cognitive, behavioral, and personality
correlates of HIV positive persons’ unsafe sexual behavior. Journal of Applied Social
Psychology, 29(2): 223-224. doi: 10.1111/j.1559-1816.1999.tb01383.x
Wulfert, E. & Wan, C.K. (1995). Safer sex intentions and condom use viewed from a health belief,
reasoned action, and social cognitive perspective. Journal of Sex Research, 32(4): 299-311.
DOI: 10.1080/00224499509551803
Wulfert, E., Wan, C.K. & Backus, C.A. (1996). Gay men’s safer sex behavior: An integration of three
models. Journal of Behavioral Medicine, 19(4): 345-349. DOI: 10.1007/BF01904761
Wu, Z.Y. & Wang, Y. (2010). China meets new AIDS challenges. JAIDS Journal of Acquired Immune
Deficiency Syndromes, 53(Suppl.1):S1-S3. Doi: 10.1097/QAI.0b013e3181c7d379
Wu, Z.Y. (2009). China’s assessment and responses to HIV epidemic in MSM. presentation at: WHO
meeting on MSM; 8 Feb 2009; Geneva, Switzerland.
454
Wu, Z., Sullivan S.G., Wang Y., Rotheram-Borus, M.J., & Detels, R. (2007). Evolution of China's
response to HIV/AIDS. The Lancet, 369(9562), 679-690. DOI:
10.1016/S0140-6736(07)60315-8
Wu, Y., Yan, H., Qu, W., Lun, W., Huang, H., Wu, D., Wang, K., Li, X., & Xu, K. (2011). 北京地区
2001-2010 年 MSM 人群 HIV 感染状况及综合干预模式的探讨 [Survey of HIV infection among
MSM in Beijing from 2001 to 2010 and exploration of models of integrated intervention]. 中国
艾滋病性病 [Chinese Journal of AIDS & STD], 17(4), 407-409.
Xie, X.Y. and Mari, K.S. (2011). Quality of life and related factors among people living with HIV in
China. Journal of Nursing and Healthcare of Chronic Illness, 3, 513-520. doi:
10.1111/j.1752-9824.2011.01127.x
Xu, J.J., Zhang, M., Brown, K., Reilly, K., Wang, H.L., Hu, Q.H., Ding, H., Chu, Z., Tristan, B., Shang,
H. (2010). Syphilis and HIV seroconversion among a 12-month prospective cohort of men who
have sex with men in Shenyang, China. Sexually Transmitted Diseases, 37(7): 432-439. doi:
10.1097/OLQ.0b013e3181d13eed
Yallop, S.L. (1999). Positive employment service—facilitating employment for people living with HIV.
Work, 13:211-215. Retrieved from
http://iospress.metapress.com/content/rawm2fccthn638fk/fulltext.pdf
Yang, H.M., Li, J., Wu,Z.Y., Xu, L.Z., Wang,K.A. (2003). Aizibing bingdu ganranzhe he aizibing
huanzhe weisheng fuwu liyong ji yiliao feiyong de yanjiu [Study on the utilization of health
services and costs of hospital-based medical care for 29 patients with HIV/AIDS in China].
Zhonghua liuxingbingxue zazhi [Chinese Journal of Epidemiology], 24(5): 393-396.
Yang, H.T., Hao, C., Huan, X., Yan, H., Guan, W., Xu, X., Min, Z., Tang, W., Wang, N., & Lau, J.T.F.
(2010). HIV incidence and associated factors in a cohort of men who have sex with men in
Nanjing, China. Sexually Transmitted Diseases, 37(4): 208-213. DOI:
10.1097/OLQ.0b013e3181d13c59
Yang, L.H. & Kleinman, A. (2008). ‘Face’ and the embodiment of stigma in China: The cases of
schizophrenia and AIDS. Social Science & Medicine, 67(3): 398-408. doi:
10.1016/j.socscimed.2008.03.011.
Yang, M. (1994). Gifts, favors, and banquets: the art of social relationships in China. Ithaca/London:
Cornell University Press.
Yang, X. (2005). Does where we live matter? Community characteristics and HIV/STD prevalence in
southwestern China. International Journal of STD and AIDS, 16(1), 31-37. DOI:
10.1258/0956462052932610
Yang, X. (2001). Are temporary migrants escapees of the one-child-per-family population policy: a
revisit to the detachment hypothesis. Biodemography and Social Biology, 48, 151-170. DOI:
10.1080/19485565.2001.9989032
Yang, X., Derlega, V.J., & Luo, H. (2007). Migration, behaviour change and HIV/STD risks in China.
AIDS Care, 19(2), 282-288. DOI: 10.1080/09540120600909414
455
Yin, R.K. (1994). Case Study Research: Design and Methods (second edition). Thousand Oaks, CA:
Sage Publications.
Young J.C. (1981). Non-use of physicians: methodological approaches, policy implications, and the
utility of decision models. Social Science & Medicine. 15(4), 499-507. DOI:
10.1016/0160-7987(81)90024-7
Yu, X.N., Lau, J.T.F., Mak, W.W.S., Cheng, Y.M., Lv, Y.H. & Zhang, J.X. (2009). Risk and protective
factors in association with mental health problems among people living with HIV who were
former plasma/blood donors in rural China. AIDS Care, 21(5): 645-654. DOI:
10.1080/09540120802459770
Yu, J. & Ding, J.H. (2010). 中国户籍制度的政策效应, 改革取向与步骤选择 [The policy effectiveness,
reform direction and progress options in China’s household registration system]. 华东师范大
学学报（哲学与社会科学版）[The Journal of East China Normal University (Philosophy and
Social Sciences Edition)], 4, 65-74.
Zeng, H.F., Qin, Y.M., Ye, B.Y., Zhang, R., Lin, A.H., & Cai, W.D. (2006). Survey of infectious status of
HIV/AIDS in male homosexuals in Shenzhen City. China Tropical Medicine(中国热带医学杂志),
2006, 6(9): 1686-1688.
Zen'Ya, K., Hui, C., HASSAN, A. (2007). Knowledge Structure of Human Intentional Activity and Its
Works. SIG-KBS, 76:69-74.
Zhang, B.C. & Chu, Q.S. (2005). MSM and HIV/AIDS in China. Cell Research, 15: 858-864. doi:
10.1038/sj.cr.7290359
Zhang, F., Haberer, J.E., Wang, Y., Zhao, Y., Ma, Y., Zhao, D., Yu, L., & Goosby, E.P. (2007). The
Chinese free antiretroviral treatment program: challenges and responses. AIDS, 21(suppl 8):
S143-S148.
Zhang, L. (2001). Strangers in the city: reconfigurations of space, power, and social networks within
China’s floating population. Stanford: Stanford University Press.
Zhang, M., Xu, Q., Zhang, H., Wang, X., & Zhang, H. 2007. Aizhibing xiangguan laonianren xinli
jiankang zhuangkuang diaocha [Investigate on psychological status of the elderly with
HIV/AIDS]. Zhongguo gonggong weisheng [Chinese Journal of Public Health], 23: 1069–1070.
Zhao, X.K. (2009). 浅析“户口歧视”问题 [The analysis of Hukou discrimination, Legal System and
Society],《法制与社会》[Legality and Society], 5(15), 240.
Zeidner, M., & Endler, N.S. (1996). Handbook of coping. New York: John Wiley.
Zhao, Z.W. & Luo, P. (2011, March 28). 艾滋病就业歧视案终审 艾滋感染者再败诉[AIDS
employment discrimination case of Final Appeal, HIV infected person and then losing]. 羊城晚
报 [Yangcheng Evening News]. Retrieved from
http://news.ycwb.com/2011-03/28/content_3393152_3.htm
Zheng, Y.J., Wang, Z.X., Xu, J. Zhao, B. & Zhang, H.B. (2004). Nannan xingjiechuzhe shehui xinli
tezheng [Social psychological characteristics of men who have sex with men]. Zhongguo
xingweiyixue kexue [Chinese Journal of Behavioral MedicAL Science], 13(6): 665-667.
456
Zhong, F., Lin, P., Xu, H., Wang, Y., Wang, M., He, Q., Fan, L., Li, Y., Wen, F. & Liang, Y. (2011).
Possible increase in HIV and syphilis prevalence among men who have sex with men in
Guangzhou, China: results from a respondent-driven sampling survey. AIDS and Behavior,
15(5): 1058-1066. DOI: 10.1007/s10461-009-9619-x
Zhou, YR (2009). Help-seeking in a context of AIDS stigma: understanding the healthcare needs of
people with HIV/AIDS in China. Health & Social Care in the Community, 17(2): 202-208. DOI:
10.1111/j.1365-2524.2008.00820.x
Zhu, Y. (2007). China’s floating population and their settlement intention in the cities: Beyond the
Hukou reform. Habitat International, 31, 65-76. Doi: 10.1016/j.habitatint.2006.04.002
457