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

PLAN B
RESEARCH PROJECT
AIDS IN RURAL AREAS: CHALLENGES FOR SERVICE DELIVERY AND ACCESS
by
Maureen Griffin
University of MN-Duluth
Department of Social Work
M.S.W. Program
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ACKNOWLEDGEMENTS
Clyde Holmes, the AIDS counselor and advocate at Duluth
Community Health Center (DCHC), served as an advisor throughout
project implementation. He provided direction in defining
parameters of the study and helped establish a focus
relevant to the Center's interests.
In addition to office space and other clerical resources
(copier, paper clips etc.}, Clyde Holmes and DCHC provided me
with information from their own literature and reference library.
I also received access to other necessary survey materials,
including envelopes and a postage meter. These conveniences
helped minimize expenses and time spent "negotiating" outside
resources.
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I
AIDS IH RURAL AREAS: CHALLENGES FOR SERVICE DELIVERY AND ACCESS
I. Ilf'l'RODUCTIOH
A. Statement of the Problem
AIDS or Acquired Immune Deficiency Syndrome is a lethal
disease
that has defied efforts of the medical and scientific
community to understand its progression, control its symptoms,
and cure
persons with AIDS.
Since 1981, over 230,000 cases of
AIDS have been reported to the U.S. Centers for Disease Control
(CDC).
Furthermore, CDC estimates that over a million persons in
the United states are infected with Human Immunodeficiency Virus
(HIV), the virus that causes AIDS (Center for Disease Control,
1992).
Although commonly associated with urban environments, the
epidemic of AIDS has spread in mass proportions, and rural
America is not immune to its wrath.
The following research project explored the phenomenon of
AIDS in rural areas.
Analysis of research findings assessed the
need for rural service development and/or expansion targeting
persons with AIDS and their significant others.
The dynamics of rural communities present particular
challenges to traditional, urban-focused service models.
These
considerations take on an even greater complexity when the issue
or problem to be addressed is AIDS.
Through my research I
studied the characteristics of rural living related to AIDS, the
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2
implications these factors and/or barriers pose for service
intervention, and what strategies for service implementation and
development rural service providers consider feasible and
sensitive to
environmental context.
The impetus for this project came out of a grant awarded to
the Duluth Community Health Center's AIDS advocacy and counseling
program, to develop an AIDS service curriculum for persons in
geographically isolated areas.
The research targets service
professionals and other contact persons working in some capacity
with rural residents with AIDS and/or their families.
B. Review of the Literature
1. Definition of Key Concepts
AIDS or Acquired Immunodeficiency Syndrome is a viral
disease that impairs the body's ability to combat disease (Bell,
1988).
Breaking down the immune system, AIDS leaves the
individual susceptible to infection and life-threatening
illnesses.
The virus that causes AIDS is known as the Human
Immunodeficiency Virus or HIV.
HIV is usually transmitted
through "semen, blood, or vaginal discretion during anal,
vaginal, or oral sex, and by the direct exchange of blood" (e.g.,
transfusion) (MN Dept. of Health, 1992).
Although there is a
wide range of individual variability, the period of time between
HIV infection and AIDS diagnosis averages between 8-10 years (MN
Dept. of Health, 1992).
To date there is no cure or treatment
for the immune deficiency underlying AIDS.
However, drug therapy
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3
and alternative methodologies have been relatively successful in
delaying the disease progression and managing symptoms.
Epidemiological evidence reveals a greater number of
reported AIDS cases among groups who engage in "high risk
behavior".
Due to an increased risk of contracting AIDS through
one of the modes of transmission mentioned previously, gay and
bisexual men, intravenous (IV) drug users, and hemophiliacs are
commonly identified as at risk (Bell,1988).
In recent years
reported cases for heterosexuals, women in particular, have
experienced a significant rise in HIV infection and AIDS cases.
Particularly prevalent among the more vulnerable are those who
are poor and those of African-American and Hispanic background.
Women and children constitute the fastest growing at risk
population for HIV/AIDS (Nuccio, 1991).
In addition to expanding
the demographic profile of those affected by the disease, the
"de-ghettoization" of AIDS also signifies a shift or broadening
of geographic boundaries of HIV/AIDS-infected populations which
are virtually limitless given present trends.
The definition of the term "rural", incorporating references
to geographic and population boundaries of a particular area, has
been variably reported with broad range throughout the
literature.
For the purposes of this study, the definition cited
by Rounds is used (1988a): "Rural refers to the environmental
surroundings, the social systems, the people who reside in areas
that have relatively low population density, usually in the
country or in small towns or villages".
The later portion of
4
this definition will be expanded somewhat to include the city of
Duluth in the scope of study.
Explained in further detail in a
following section, Duluth is a locus for many AIDS-related
networks in St. Louis county and thereby a major referral
resource for smaller rural townships.
The numerical maximum for
"rural" communities, prevalent in literature, is between 50,000
and 100,000 residents (Dhooper & Royse, 1989).
This study
focuses on communities with less than 100,000 residents,
including the city of Duluth.
Categories of needs and services implemented in this study
were derived from common lists discussed in human service
literature (e.g. counseling, referral, and case management).
For
these purposes, "significant others" encompasses family,
relatives, friends, spouses, partners, and intimate caregivers.
On a broad range, needs of this client population cover social,
emotional, psychological, biological (medical), and spiritual
dimensions.
In the form of services, these needs include AIDS
treatment and drug therapy, counseling and support networks,
socialization opportunities, transitional housing, legal aid,
financial assistance, individual case management, practical
support/assistance (daily living needs), and accessible outlets
to provide and coordinate information, education, and referral
services.
Barriers to service provision and utilization in rural
areas, while individually complex, involve common challenges in
the field.
Offering a generalized definition, Rounds (1988b)
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5
identifies maintaining continuity of care, ensuring
confidentiality, and working with scarce resources as consistent
obstacles to service delivery.
2. Characteristics of Rural Community Related to HIV/AIDS
The dynamics of rural living shape community identity and
often set a precedent for the behavioral norms and character of
its residents.
Throughout the following literature review on
AIDS, the rural "component" is explored for its implications for
service provision and relation to attitudes toward AIDS and highrisk populations.
In their description Smith, Landau, and Bahr
(1990) refer to a commonality of characteristics as indicative of
rural "culture".
A more obvious challenge to service provision
in rural areas is geographic location.
Lack of services and a
maldistribution of health care providers in many rural
communities present implications for travel, heightened costs,
and diminished opportunities for continuity of care.
In addition to identifying geographic and structural
barriers, the literature reveals common themes pertaining to
ethical considerations and community attitudes.
The issues of
confidentiality and informed consent are of major concern
regarding the disclosure of HIV or AIDS status and pursuing
necessary treatment.
Smith (1990) contends that these issues
have even greater implications in the context of a small town,
rural community.
He describes the community as an atmosphere in
which, "everyone seems to know everyone else's business" and
6
expands upon the accommodations made by clients (PWAs) in order
to protect anonymity and avoid public stigma.
Attention to confidentiality reveals additional concern for
AIDS-related care including fears of AIDS contagion and
homophobia, an "unreasonable fear of homosexuals" (Smith, 1990).
Rounds (1988a) and Smith (1990) both explore the impact of
homophobic attitudes among generally conservative rural
communities.
These authors contend that the low visibility or
unidentified existence of the "gay community" in many rural areas
prevents exposure to positive gay role models.
Smith (1990)
suggests that this factor compounded with societal stigma
surrounding AIDS contagion or transmission makes it difficult to
separate response to AIDS-related issues from homophobic
attitudes.
Living conditions prevalent in many rural environments,
primarily poverty and homelessness, call attention to additional
considerations for AIDS care and meeting treatment needs.
Citing
areas that lack running (hot) water and refrigeration methods,
Smith, Landau, and Bahr (1990) explain that substandard housing
often does not meet infection control guidelines.
In regards to
homelessness in rural America, these authors elaborate on the
vulnerability of the homeless to engage in high-risk behavior in
regards to AIDS transmission, such as substance abuse and
exploitive activities.
Poor nutrition, substandard living
conditions and lack of access to health care has been found to
contribute to a significantly shorter life span of rural,
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homeless persons with AIDS (Smith et al, 1990).
Another characteristic of rural communities prevalent in the
literature and relevant to the experience of rural AIDS is the
value of family.
In many reviews, rural America is identified as
one of the few remaining vistas where the traditional nuclear and
extended family continues to flourish.
The role of the family as
a primary mechanism for socialization and support is threatened
when a family member has AIDS.
The literature explores how the
AIDS epidemic affects family functioning, interactions, and
community standing (Nieto, 1989).
Integrated throughout writing on rural AIDS is the power of
rural attitudes and ideologies in shaping communities' response
to AIDS.
Dhooper and Royse (1989) elaborate on generalizations
formulated through their survey findings in comparing urban and
rural attitudes towards AIDS.
Compared to counterparts in small
towns and cities, rural residents were found to be less informed
about AIDS, less empathetic toward persons with AIDS, and less
tolerant of behaviors/lifestyles associated with AIDS,
specifically homosexuality and IV drug use.
Given the level of
investment in establishing and maintaining cultural norms and
values, the introduction of a new "element" into the rural
community, particularly an issue of societal stigma and
stereotypes, presents a barrier at the core of opposition or
resistance to an AIDS service network.
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3. Service Strategies and Interventions
Utilizing urban modalities to contrast and explain causality
for different rural attitudes is common in the literature.
Anderson and Civic (1988) expand upon this precedent in examining
the service delivery systems and sociocultural profiles of urban
and rural areas.
In focusing upon the psychosocial implications
for residents with AIDS, these authors present various stages in
the disease progression.
Each stage is characterized by
psychosocial indicators, such as intensity of emotional trauma
and level of coping ability.
Cleveland and Davenport (1989)
support the contention that urban service models and specialized
agencies are not applicable to the needs of rural areas.
These
authors off er insight into the social consequences of this
dichotomy.
Given the context of the rural culture, research has
explored the feasibility of developing AIDS-specific service
organizations in rural areas.
Those characteristics previously
cited as prevalent in many rural communities present significant
challenges to service establishment, delivery, and utilization.
The interplay of conservative moralistic values described by
Dhooper and Royse (1989) discourage efforts to incorporate AIDS
care into pre-existing and informal rural service networks, in
addition to deterring investment and planning for new
developments or organized referral systems.
Discussing the level of social consciousness in rural areas,
Anderson and Civic (1989) extend the lack of community support
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9
for an AIDS agenda to the response of service providers and
health care professionals.
The implications of being labeled an
"AIDS treatment center" or "gay organization" threatens providers
serving rural areas with similar stigma faced by persons with
AIDS (PWAs}.
Not wanting to alienate other clients and risk
losing service, providers or organizations may be reluctant to
take a position on AIDS-related care and/or deny AIDS as a health
priority for the community.
In their article, Cleveland and
Davenport (1989} call on providers and health care workers to be
aware of their own issues regarding HIV and AIDS and recommend
self-exploration and educational efforts.
Rounds (1988b) proposes an intervention approach that
utilizes a system-wide perspective.
Targeting the various social
systems that impact the client population and enable an
integrated service response, Rounds expands on efforts to educate
the rural community, develop an AIDS-related service
network, and lobby for state AIDS policy.
The incidence of HIV/AIDS among persons of American Indian
background and generalized experience of the AIDS phenomenon in
reservation communities has been described in literature.
Conway
(1992} and several researchers from facilities throughout the
U.S. (1992} organized a network of surveys pertaining to HIV
infection among American Indians and Alaska Natives.
Preliminary
research revealed that "American Indians share a number of
characteristics with other minority groups in the U.S.
experiencing an increase in HIV infection" (Conway et al., 1992).
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Based on findings regarding populations in the survey,
researchers suggest that in some rural areas, American Indians
may be at greater risk of contracting the virus than persons of
other races.
The article describes potential factors
contributing to a high risk of HIV transmission among U.S. Indian
populations.
These include a high incidence of STD (sexually
transmitted disease) infection, alcohol and drug use, and effects
of poverty and unemployment.
Recommendations to the Indian
Health Service and other agencies for providing STD/HIV education
and risk assessment during clinical opportunities is also
addressed.
c.
Significance of the Study to Social Work
The social work profession presents a service model with
systematic considerations necessary to address the needs of
minority populations and the communities affected by their
presence.
Human service workers' involvement and experience in
the organization and implementation of specialized services
carries over in working with persons with AIDS.
Practicing from
a generalist's framework, social workers are able to respond to
the needs of various populations, while demonstrating sensitivity
to individual need and circumstance (person in the environment
approach).
Rural AIDS presents challenges to individuals and
communities that call for an approach that values diversity and
seeks to negotiate among systems and enable them to work
together.
11
The impetus for social work intervention in rural areas is
becoming more and more apparent.
Social workers in specialized
urban agencies report AIDS patients traveling great distances to
utilize support services and receive necessary medical care.
Moreover, another increasing trend finds persons with AIDS,
particularly those in terminal phases of the illness, returning
to rural residences to seek refuge with family and friends.
Establishing service delivery networks and expanding on informal
support systems in rural communities would serve to target unmet
needs.
Social workers have been on the forefront of service
initiation and would be a valuable resource for
AIDS awareness
and intervention in the rural environment.
D. Research Questions
Survey questions posed to rural service providers and
contacts participating in the study were designed to discover
what respondents identify as needs of the client populationpersons with AIDS and their families and what service strategies
respondents recommend.
Based on the service challenges and unmet
needs described in the literature review, the project addressed
the following research questions:
What is the incidence and demographics of persons with AIDS
in the sample area (SE St. Louis County, Iron Range townships in
northern St. Louis County, and reservation communities in the
county) (questionnaire items #4 & #5 and "Demographic
Characteristics" section)?
What services, public, informal,
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12
and/or AIDS-related, are available in these rural communities
(item #7)?
How do PWAs in rural areas access needed medical
care, support services, and practical assistance (item #6)?
To
what extent are treatment and support needs for PWAs and their
significant others satisfied or met within the rural environment
by informal resources or social networks (item #9)?
To what
extent are urban service networks effectively utilized and what
problems are inherent to geographic location and/or distance
(items #10, #11 & #13)?
How has the rural community responded to
the AIDS phenomenon and to the existence or potential of
residents with HIV or AIDS (Does the community exemplify the
characteristics described in the literature review?) (items #12,
#14, & #15)?
What barriers have service providers encountered in
delivering service, accessing resources, coordinating referrals,
and working with or educating the rural community about AIDS
(items #10 & #13)?
What service strategies have been effective
or ineffective in these endeavors (item #11)?
What future
recommendations do service providers have for AIDS-related care
in rural areas (item #11 and "other" response comments)?
II. METHODOLOGY
A. Population and Sample
Given the awakening awareness of many rural areas to AIDS
and newly formulated community responses to the epidemic, the
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existence and development of an AIDS-specific service network is
yet to be realized in most areas.
Consequently, human service
providers and contacts working with rural residents with AIDS are
less prevalent and, similar to rural AIDS, they have low
visibility as an AIDS resource person.
The majority of potential survey respondents for the study
were determined by using a snowball method.
This involved
soliciting referral contacts and recommended service networks
from initial or confirmed participants.
AIDS-related service
directories and resource publications of area agencies were also
used to supplement the sample.
Many of the service providers and contact persons included
in the sample were persons who have had service-related
associations with the Duluth Community Health Center through
referral processes and/or through informal contacts with the
Center's AIDS counselor.
Additional responses were gathered from
a resource listing of HIV/AIDS prevention services published by
the Minnesota Department of Health.
In the formulation of a
feasible sample within the Duluth Community Health Center's
service area, the focus was primarily within the parameters of SE
St. Louis County.
An interview with·a representative from the Minnesota AIDS
Project-Duluth Office helped to further define geographic
boundaries for the study and provided recommendations of areas
offering cultural diversity.
solicited respondents.
The resulting sample size was 55
Forty-five out of the 55 were from
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Duluth, where the majority of area AIDS service providers are
located.
The remaining 10 included agencies from several Iron
Range townships, as well as from the Fond Du Lac and Nett Lake
reservation communities.
Of the 55 questionnaires mailed, 28
were returned, and 26 of these 28 were from Duluth.
The
potential over-representation of Duluth providers is a
consideration for analysis and interpretation of survey findings.
B. Research Design
The research study can be classified as a needs assessment,
exploring the need for community health and social services for
persons with AIDS and their families in rural areas.
serves both descriptive and exploratory purposes.
This design
Review of
relevant literature and findings from data analysis were both
helpful in describing the nature and extent of the problem, in
addition to identifying unmet needs and the potential for and/or
recommendation of service strategies.
Designed as a needs assessment, the study utilized a
questionnaire survey instrument.
The survey nature of the study
provided a means to research issues relevant to AIDS-related
service development and program planning.
The questionnaire was
formulated to identify needs of PWAs, while assessing
implications of rural residence.
In addition to eliciting
information on the need for individual advocacy and service
coordination, survey items pertained to characteristics of rural
culture; thereby, providing a venue to explore strategies of
15
intervention on a community level.
Given the varied
concentration of AIDS-related service providers throughout St.
Louis County, the survey was deemed an effective
research design for reaching a dispersed sample population.
c.
Data Collection
The research instrument implemented was a mailed
questionnaire.
(Refer to appendix item).
Although the identity
of respondents was needed to distribute the questionnaire and
initiate necessary follow-up, confidentiality was protected in
reporting findings and formulating generalized results.
Designed to generate both quantitative and qualitative data,
the survey included a combination of closed and open-ended
questions, while attempting to maintain a sense of consistency or
flow of format.
Efforts were taken to utilize clear terminology,
concise wording, and directional keys in order to deter
confusion, minimize misinterpretation, and increase chances for a
high completion rate.
In order to garner objective feedback on
the survey instrument, I reviewed the questionnaire with DCHC
staff for evaluation and feedback.
The actual dispersement of the questionnaire survey involved
compiling an organized mailing list.
Accompanying the
questionnaire was a letter identifying myself, explaining my
connection to the sponsoring agency, outlining the purpose of the
study, and providing insight into the utilization of findings and
relevance to the respondent (see appendix A).
16
D. Data Analysis
After analyzing feedback from the survey, the individual and
collective merit of responses was assessed.
Attempting to
minimize complexity and manage the range of survey responses, a
coding system was developed.
This system, based on the
organization of items under topical categories (e.g., service
barriers, rural characteristics, service strategies), involved
manual data recording and calculations.
Since the study identified characteristics of rural
communities and explored the implications (relationship) these
variables have for serving PWAs in rural areas, the computations
necessary for data analysis primarily involved descriptive
statistics.
The questionnaire implemented incorporates a combination of
measurement levels.
Nominal level data is concentrated in the
section pertaining to demographic questions and "yes/no"
indicators.
A substantial number of questions called for ordinal
measures, asking respondents to rank items utilizing a key
provided above the answer space.
Ratio data, in which one of the
answer options is "none" or zero, was used in only a few
questions.
Interval measurements were allowed for in items
utilizing a Likert scale format, thereby assessing the
distribution or distance between responses.
Data was primarily
reported descriptively through frequencies and percentages.
B. Limitations
As mentioned previously, the sample of the study some
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questions regrading representation of the overall population.
The newness of rural AIDS and attention to service interventions
sensitive to the characteristics of rural communities presents
some obstacles to resource allocation and data collection.
The
formulation of the sample relied on the personal referrals and a
limited number of professional listings/contacts dealing
specifically with rural AIDS.
This process of researching
respondents is non-random and presents the potential for
selection bias.
A disadvantage of the mailed questionnaire was the
variability of response rate and vulnerability inherent to
relying on respondent initiative to complete and return the
instrument.
Moreover, the format design of the questionnaire and
other consequences of instrumentation may have contributed to
biased, invalid, or incomplete results.
Another issue regarding limitation concerns is the question
of external validity, or how well the survey findings and
research conclusions can be generalized to other rural areas,
particularly those offering different client demographics and
service resources.
The most apparent problems come about when
attempting to generalize outside of the Midwest, where the
incidence and experience of the AIDS phenomenon is neither
numerically nor sociologically comparable to other parts of the
U.S., such as the east and west coasts.
It is on the relatively
more micro level, assessing rural populations with similar
resident demographics and community resources, particularly in
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midwestern regions, that generalization may have greatest
applicability.
In the proposed research, efforts were made to include
representation from providers working with American Indian
communities and also those providing services to the northern
Iron Range townships.
Unfortunately, none of the questionnaires
sent out to respondents with affiliation ·to these population
returned questionnaires.
Moreover, out of the 55 respondents in
the sample, 10 were from outside the Duluth area.
these ten questionnaires were returned.
Only two of
These findings hinder
efforts to incorporate diversity and represent under-served
populations.
III. RESULTS
A. Survey Respondents
The initial portion of the questionnaire sought descriptive
information pertaining to the position or service role of
respondents and identification of the type of agency or
organization with which they are affiliated.
Allowing providers
to indicate more than one response item in these areas, the
questions assessed multiple roles of providers and reflected
diverse ·agency representation.
A majority of survey (43%) were community service or social
workers and employed at a social service agency.
Other prevalent
19
occupational responses included health practitioners (30%),
counselors or support people (26%), and educators (26%).
Regional hospitals (36%) and social service agencies or
departments (36%) were among the majority of agencies/employers
represented in the sample.
Detailed findings are included with
the sample questionnaire in Appendix A.
It should be noted that,
overall, response frequencies for individual items were
relatively small given the diversity of the sample and multiple
number of response options.
Nineteen out of twenty-three survey respondents (83%)
indicated that they have had service-related contact with persons
with AIDS in the past five years.
The most prevalent range of
first time service contacts (67%) was within one to five contacts
over this time span.
Three providers indicated that they have
had twenty or more service contacts with PWAs since 1988.
The most prevalent type of service referral received by
service providers, comprising 37% of responses, was referral from
a health care provider or medical center, which was followed
closely in frequency by self-referral.
Thirty-two percent of
respondents for this item rated community outreach as the least
prevalent type of referral.
B. Services
Survey findings relating the type of services offered by
respondents revealed a fairly even distribution among responses.
Sixteen out of twenty-three respondents who answered this item
20
(70%) provide referral and counseling services, the highest
frequency response.
These services were followed consecutively
by education (65%), information dissemination (61%), medical
(57%), concrete or practical assistance (57%) (e.g.,
transportation, housing, food, etc.), case management (30%), and
legal services (9%).
Considering the variable of rural residence, data analysis
revealed an almost even split between respondents who indicated
service restrictions to specified geographic boundaries or
service areas (52%) and those who did not (48%).
Among
providers citing service areas, many described services limited
to county of residence or restrictions related to program
eligibility or intake screenings to determine appropriateness of
referral.
In regards to informal support networks or community
organizations or groups not formally recognized for services they
may provide, the majority of the respondents who answered the
item (82%) identified the presence of volunteer caregivers or lay
persons in the communities they served.
C. Barriers
The next section of the survey questionnaire addressed
factors that impede or prevent respondents from delivering AIDSrelated services in rural areas and that hinder PWAs' access to
needed services.
Assessed according to degree of prevalence,
fear of disclosure of HIV/AIDS status (67% of item responses)
21
and financial costs (50% of item responses) were considered the
most prevalent barriers by a majority of respondents.
Similar
frequencies were indicated for barriers considered somewhat
prevalent.
Lack of awareness of HIV and AIDS (67% of item
respondents) and transportation (50% of item responses) were most
frequently identified in this category.
The proposed barrier
considered least prevalent by a majority of these respondents
(33%) was PWAs' denial of medical need or support.
The extent to which specified barriers are perceived as
problematic by service providers was also addressed in the
questionnaire.
Seventeen out of the twenty-one respondents (81%)
indicated that a limited or unequal distribution of health care
providers in rural areas was a significant problem.
Relating a
similar concern, problems associated with geographic isolation of
residence were identified by 67% of the item's respondents.
Barriers receiving high frequencies of least problematic
assessments, each indicated by 38% of respondents for this item,
were the standard of living of the client population (e.g.,
homelessness, poverty) and community resistance to AIDS-related
resource development and service intervention with PWAs.
D. Service Strategies
Considering options for rural intervention, survey
respondents assessed the feasibility and effectiveness of several
proposed service strategies.
Eighty-one percent of these
22
respondents perceived training service providers to work with
PWAs as a highly feasible and effective strategy.
Educating
rural communities (71% of item responses) and involving persons
through community outreach (57% of item responses) followed in
frequency.
The approach assessed as offering low feasibility and
effectiveness by a majority of respondents (38%) was referral of
PWAs and persons seeking AIDS-related services to urban agencies
and resources.
For the remaining strategies, most responses fell
into the medium range of the assessment scale.
E. Rural Characteristics
Exploring environmental and contextual factors related to
service delivery and access, the survey addressed the influence
of community attitudes and characteristics often associated with
rural areas.
One item asked respondents to indicate the extent
of their agreement or disagreement with several attitudinal
statements.
Stipulations of traditional moral values, and
territorialism (resistance to "outsiders") in rural communities
received a widely dispersed range of strongly agree, agree and
neutral responses.
The concentration of responses regarding
strong religious convictions in rural areas was divided between
agree (40%) and neutral (40%) ratings.
Fifteen out of the item's
twenty respondents (75%) agreed with a tendency toward
conservatism among rural populations. The greatest frequency of
strongly agree responses, 14 out of 20 (70%) of these
respondents, were associated with the prevalence of homophobic
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23
attitudes in rural areas.
Other items under this topic area requested assessment of
the variable of rural residence in relation to AIDS-specific
concerns.
The perceived level of knowledge of HIV and AIDS in
rural communities was one area explored.
Of those issues that
received low ratings, communities' knowledge of AIDS symptomology
and disease process (29%) and the medical definition of AIDS
(19%) were the two highest frequencies.
Issues with a greater
frequency of somewhat knowledgeable and very knowledgeable
ratings from the item's responses were high risk behavior (71%),
safer sex (62%), and AIDS prevention (57%).
Overall across
suggested responses (issues), eighty-five percent fell into the
somewhat knowledgeable and general awareness response range.
In another questionnaire item service providers were asked
to identify rural attitudes and incidents posing resistance to
recognizing AIDS-related problems and validating the need for
service opportunities.
Referring to a generated list,
eighty-eight percent of these respondents checked at least one of
the response options, and several (27%) chose all of the
statements.
The perception that "AIDS is a gay disease" was the
most frequently chosen response, indicated by 20 out of the 22
respondents (91%).
The attitude with the minimum number of
responses, 10 or 45% of these respondents, was the perception of
PWAs as an "undeserving (service) population".
The final section of the survey questionnaire asked
respondents to assess demographic characteristics of PWAs with
24
whom they have had service-related contact in the past five
years.
Considering demographic categories of gender, age, race,
sexual orientation, employment, and living situation, providers
estimated perce·ntages from this client population that applied to
specific characteristics.
Summarized findings of this data is
outlined in Table I. below (pg. 25).
Calculation of demographics percentages provided an overall
profile of a "typical" or most common service contact among
survey respondents.
Based on the highest frequencies and
percentages, this individual would be a male, 30-40 years of age,
white, homosexual, living alone or with a family member, and
unemployed.
TABLE. I.
tF a.JENT Pa'.UTiat
1-S
JS£RCan'AGEs
s-10
7
1
3
2
2
2
2
1-20 21-30 31-40 41-SO 151~
3
1
2
1
1
2
1
1
1
1
4
1
1
2
2
1
3
1
4
2
1
2
1
1
5
:2
1
1
2
1
1
1
3
"
1
1
1
1
3
1
1
2
20
16
1
8
1
1
14
19
7
0
3
6
1
5
1
1
2
23
1
2
2
3
3
2
3
4
2
1
2
3
2
1
1
1
4
2
3
3
3
s
1
3
1
1
1
1
3
1
1
1
1
1
1
2
t
14
1
6
6
1
c
19
0
1
1
14
11
19
1
15
18
12
1
1
2
1
1
1
2
4
1
1·100 Total
s
2
2
1
2
1-70.. 1-80
1
3
2
1'
P#All)
1
3
1
2
2
3
2
1
4
t
1
2
3
5
1
3
2
1
1
1
3
1
1
3
4
1
1
1
4
1
2
1
1
1
9
5
14
5
6
1
2
20
19
19
17
19
13
18
26
IV. DISCUSSION
Review of data analysis findings pertaining to survey
respondents and services reveals a typical profile (prevalent and
high frequency responses) of AIDS-related services involving PWAs
in rural communities.
The typical case example involves an
individual with HIV or AIDS being referred for services from a
health care provider or medical center to a social service
agency.
In the past five years the worker from this agency would
have had between 1-5 first time service contacts with PWAs or
with family members.
Findings related to provider position and service agency
were primarily utilized to assess which resource persons and
agencies are most involved in and/or utilized for AIDS-related
services.
The influence of selection bias as described in the
limitations section may affect these findings.
From the initial
sample, providers from social service agencies and regional
hospitals-the responses with the highest frequencies-were
over-represented.
However, due to a lack of other resources and
the eclectic orientation of these agencies, the conclusion that
they are the most prevalent and utilized service venues for rural
PWAs is not necessarily inaccurate.
Given the aforementioned findings, one recommendation to
hospital and social service representatives is to assess the
incidence of service utilization by persons commuting from rural
residences.
The objective is to explore the extent to which
27
AIDS-related services and/or resources can be allocated to or
developed within rural communities to enhance and increase
accessibility.
The needs of persons with AIDS include universal
concerns, such as basic health care and support networks, but
also involve ramifications specific to the diagnosis and
progression of AIDS.
These concerns may need to be addressed by
specialists (e.g. Infectious Disease MD's) who are more likely to
be based in a more urban medical facilities rather than at a
rural community health clinic.
Hospital and social service
administrators should consider arranging for: a) medical
practitioners with expertise in AIDS treatment to regularly visit
rural centers; b) designated HIV and AIDS clinic days in rural
communities; and c) outreach support and education.
The high frequency of service referrals from health care
providers or medical centers indicates a potential for these
providers to increase rural access through their service and/or
referral contacts.
Discharge planning activities in many
hospitals and health care settings facilitates follow-up of
necessary medical attention, creates opportunity for information
dissemination, and provides a linkage to support networks.
Often, PWAs' first service encounter after diagnosis involves
medical care or health services.
Utilizing this initial service
contact to build others, offers support opportunities during a
time of crisis and anxiety.
an opportunity to give
Moreover, this intervention provides
information (e.g. literature) and discuss
concerns with rural clients/patients whose medical visits, due to
28
accessibility concerns, are often fewer and far between.
Considering the sensitivity and confidentiality surrounding
AIDS, service contact through community outreach (worker/agency
initiated) in rural areas may not be a realistic goal at present.
Designated by a majority of respondents as the least prevalent
type of referral, the data analysis seems to support this
conclusion.
Discussion of the types of AIDS-related services provided
and means of service referral for rural clients/patients brings
attention to potential barriers to delivery and access.
Fear of
disclosure of HIV/AIDS status, indicated most prevalent by a
majority of respondents, presents a barrier that is not easily
remedied by modification in program structure or reallocation of
resources.
The significance of this variable is magnified when
assessed in the context of the rural community.
Referring to
survey findings regarding rural characteristics, tendencies
toward conservatism, traditional values, and homophobic attitudes
in rural communities emphasizes the perceived consequence of
disclosure and rationale for resistance to publicly seeking
support.
Awareness of peoples' fear of disclosure and
environmental factors that come into play enhances service
providers and community resource persons' sensitivity to clients'
concerns and promotes intervention designed to minimize anxiety
and public scrutiny.
Provisions for confidentiality in formal
and informal client interactions are primary considerations.
One
recommendation to providers is to develop a service contract or
29
agreement with PWAs and/or their families that specifies who
should know about their diagnosis and who they want involved in
treatment arrangements.
This is especially critical in
close-knit rural communities in which resources are limited, and
people who are HIV positive may feel they have few options in
getting the care they need without drawing unwanted attention.
Peer companions or buddy programs in which a PWA hooks up with an
individual who provides support, advocacy, and assistance with
personal management activities may help to reduce feelings of
isolation and offer a more comfortable outlet to disclose issues.
Another recommendation addressing confidentiality is to
interview PWAs and their family members, who are most likely to
know where slippage in service delivery occurs.
Utilizing their
direct and personalized feedback promotes service expansion and
development that gives priority to needs identified by clients.
Another barrier with a high frequency of most prevalent
responses was the financial cost related to service utilization.
While universally experienced by persons with AIDS and their
families, the financial hardship incurred for AIDS treatment and
supportive services (e.g. home health care etc.) has additional
implications when access to services is impaired by rural
residence.
Assessing the extent to which barriers are perceived as
problematic, a majority of survey respondents indicated that
limited distribution of health care providers and geographic
isolation were significant problems.
These findings allude to
..
'
I
30
additional costs involved with travel expenses, including lost
wages, lodging, and transportation.
Problem-solving service strategies for reducing access
barriers involving geographic proximity of rural communities were
addressed in the survey questionnaire.
Coinciding with the
perceived barrier of commuting for service provision, a majority
of service providers gave referral to urban services a low rating
as a feasible and effective service strategy.
The approach that
received the greatest frequency of high feasibility and
effectiveness ratings was training of service providers in rural
areas to work with persons with HIV or AIDS and to become an
informational resource for the community.
Promoting service
provision within the rural community as a recommendation was also
supported as a strategy, receiving medium to high ratings, that
could be implemented locally.
These recommended services include
organizing volunteers, extending existing resources, and
recruiting informal support networks.
In regards to the latter
approach, a majority of survey respondents identified volunteer
caregivers and church organizations as the most prevalent
informal rural resources which provide services and/or assistance
to PWAs and families.
As central organizations in many rural communities, churches
frequently serve diverse functions, fulfilling spiritual,
supportive, and social and recreational needs of residents.
Often considered a source of comfort and place of refugee for
people in need, the church is a recommended service and support
\
·'
.
31
resource for PWAs in rural areas.
The prevalence of volunteer
contributions in the church community also has significance for
PWAS and their families.
In providing unconditional care and
assistance, the stigma and sense of judgement sometimes
associated with social service utilization is diminished.
Moreover, protection for individual privacy and confidentiality
inherent to church values and practices of clergy may help to
mitigate PWAs' fears of disclosure and provide a strong venue for
support.
Another recommended AIDS intervention is education.
Assessed as feasible and effective by approximately 70% of
respondents, educating rural communities about what AIDS is and
the implications for prevention and treatment provides a
foundation for service development.
Through education, residents
can gain an understanding of how they, as individuals and as a
community, can make a difference in the experience of PWAs and
their families.
Moreover, by providing concrete information and
debunking myths, education challenges stereotypes and resistive
attitudes that stigmatize PWAs and intensify previously discussed
fears of disclosure.
In-service training for rural service providers, community
forums {guest speakers) and discussion, inclusion of AIDS in
school curriculum, and circulation of AIDS-related materials are
viable education vehicles.
On a mezzo and macro level the
actions of the state and national government in regards to
allocations made for AIDS research, funding, and mandates for
32
inclusion of AIDS in educational curriculum send a message on the
priority given to AIDS and how it affects all our lives.
This
recommendation involves continued lobbying and legislative
efforts to promote AIDS education and establishing progressive
policies in other areas, such as health care coverage and
employment.
~-
APPENDIX B
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<
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