1. health and fitness

“You‟ve Got Control Of The Pump”:
The Importance Of Trust In The Drug
Treatment Clinic
Never Stand Still
Arts
Social Sciences
Centre for Social Research in Health
Carla Treloar
No conflicts of interest to declare
Strong language
Overview
1. Trust – what is it, why is it important?
2. What shapes trust?
3. How to build trust?
– Pose questions of trust for service providers
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Trust in NSP
Consumer participation in drug treatment – demo projects
ETHOS – Enhancing Hepatitis Care C in Opiate Substitution
Other literature
Key question 1
Trust – what is it, why is it important?
– How trust impacts health services
– Definitions of trust
– Trust and marginalisation
Trust & health
Widely documented as essential to effective therapeutic encounters
Affects many important health-related behaviours
– increase willingness to seek care/use health services
– encourage uptake and adherence to treatment
– enhance quality of interaction, patient-health worker
– facilitate disclosure by patients
– enable health workers to encourage behavioural change
– may grant patients more autonomy in decision making about
treatment
Sociologies of trust
Trust has been described as „a way of reducing complexity‟, „a leap of
faith‟ or „solution for specific problems of risk‟. Required when:
– Lack of knowledge of process/outcome
– Vulnerable to process/outcome (regret your action of trust)
Temporal aspect – trust is situated in the future
– “trust is historical, but it is not so much tied to the past as it is
pregnant with the future”
– Trust requires judgement about motivations/intentions of other
In health systems:
– is based around the belief that the health system and
professionals will operate in the best interests of the patient
Importance of ‘trust’ in late modern society
Increasing public scepticism and mistrust: “culture of anxiety”; “era of
insecurity”; “existential anxiety”
Trust has to be „worked on‟ and „won‟ – no longer a pre-given
Often defined and operationalised at 2 inter-related levels
– inter-personal trust (i.e. trust in doctor, peer, NSP worker etc)
– system-based (or institutional) trust (i.e. trust in the health
systems – safety, quality, confidentiality etc)
Relationships in “web of trust” – other related structures
But, in health, most trust research conducted with “patients”
– Vulnerable because of ill-health
– Other aspects of trust for marginalised, criminalised?
Trust in GPs: systems, deprivation
Trust in GPs could not be disentangled from trust in systems:
– Employment
– Environment
– Education
– Institution of government
And political and economic systems in which they are seen to be based
Ward & Coates, 2006
Trust in GPs: systems, deprivation
Widespread negative attitudes, general lack of trust toward
policymakers, government departments and statutory sector
organisations
Shared history of disinvestment and “broken promises” by range of
organisations and institutions -> general scepticism and distrust
Health as a holistic/social issue (vs purely biomedical)
Lack of trust in GP-> question validity of GP decision making eg
diagnoses, management plans and prescriptions (including not filling
them).
Ward & Coates, 2006
Questions for drug treatment
• Do clients trust your service?
– How would you know? What would trust/mistrust look like?
– What does trust matter for your service?
– If clients didn‟t trust your service, what would that impede?
– How do you demonstrate trustworthiness in your service?
• What services do you work with?
– Do clients trust those services?
– What might clients be missing out on?
– How can you build trust in other agencies important to your
service?
Key question 2
What shapes trust?
• 5 domains of trust (Hall et al., 2001)
stigma
social exclusion
symbolic violence
structural violence
Key question 2
Domains of trust? (Hall et al., 2001)
1.
„fidelity‟ - acting in patient‟s best interests, not taking
advantage of vulnerability
2.
„competence‟ - ability to avoid mistakes, achieve best
results; judgements about communication skills
3.
„honesty‟ - telling the truth; disclosure of conflicts of
interest (related to fidelity)
4.
„confidentiality‟ - proper use and protection of
personal information
5.
„global trust‟ - the “soul of trust” – note importance of
other social factors – stigma, social exclusion,
symbolic violence, structural violence
Trust
Best interests, confidentiality, honesty, global trust
• People in health can say „everything you‟re saying here is
confidential‟ and as soon as they leave the room they‟ve got,
you‟ve already signed a million papers which you‟ve given
informed consent, which means that it‟s gone to everyone else
that needs to be told and we all know that it doesn‟t stay in that
room. And it‟s just those sort of lies that, that are being
institutionalised, that everyone doesn‟t trust anymore after
being years of either through rehab, detox, you know,
treatment. Everyone‟s, they just don‟t believe the lies anymore
so they, so they don‟t put complete trust in the health
department. (Hannah, peer worker, ETHOS)
•
Treloar, Rance, in press
Trust
The worker and the system
• With the [OST] caseworker … I trust her to a point. … I
can, you know, go in there and have a cry if I need to
about something. But I don't feel like I could give her the
details of something 'cause I don't know if it‟s gonna get
mentioned at a staff meeting … The thing is with the staff
and the system is they all back each other‟s back.
(Barbara, client, ETHOS).
•
Treloar, Rance, in press
Trust
vulnerability; best interests
• there‟s things that I just know that I don‟t say to my drug and
alcohol counselor. I work, I have 4 takeaways a week. I‟m
relatively stable, I don‟t go up and down, yes, I use, but I use
on a consistent level, I take care of my health, whereas all it
would take is for [my OST prescriber] to know that I was using
and I wouldn‟t have any takeaways, therefore I would not have
any job, therefore I wouldn‟t have any income, therefore I
would lose my mortgage therefore I would lose my house and
all just because I was honest and said that I‟ve been using.
That‟s a hell of a fucking consequence for just trusting
somebody enough to say, “Yeah I had a shot last week.” (Rick,
male, 36)
•
Treloar & Mao (forthcoming)
Trust
best interests
• So I really think though a lot of people that have trouble
with clinic staff and that, it‟s just because they‟re still in
that mode of “You‟re behind the fuckin‟ thing. You‟ve got
control of the pump. You‟re authority. You‟re no good and
I‟m not gonna talk to you. I‟m not gonna interact with you.
Dose me and fuck off.” ... So that‟s what often holds them
back from talking to staff; it‟s the repercussion, the fear of
that if I do, what will happen? They might tell on me! Ah!
I might get kicked off … So they‟re gonna speak to
someone outside of the clinic. (Lilly, client, ETHOS)
•
Treloar & Rance, in press
Trust
Confidentiality, best interests
• I bought a syringe from a chemist that didn‟t have a tip on
it, I bought it for a purpose at home, oiling something that
I couldn‟t oil with a normal can and the pharmacist
reported that back to my methadone prescriber and I got
called in and ask what‟s going on with the syringe, and I
was, “Fuck do you want me to bring, I still haven‟t used
half the oil, do you want me to bring it in? Its still half full
of oil” (Rick, male, 36)
•
Treloar & Mao (forthcoming)
Global trust
• For marginalised communities – may be very
important in decisions about trust
•
•
•
•
Stigma
Social exclusion
Structural violence
Symbolic violence
Stigma
An overwhelming finding in this area – drug use and hep C
• I know how I answer his [the doctor‟s] question is going to
determine how I‟m going to get treated in this town. I
could lie and get treated well, or I could tell the truth and
get treated like shit. [In answer to the question how I
acquired it] I said “through intravenous drugs.” And his
whole demeanour towards me completely changed.
•
Temple-Smith et al., 2004, Australian Health Review
Social exclusion – and trust
• And they‟ve gotta understand that we have big trust issues.
We‟ve been fucked-over all our lives. That‟s why most of us
are addicts because we‟ve fuckin‟ had bad … not so much bad
upbringing but bad experiences … Experiences of violence in
the family, alcoholism … all that sort of thing. (Drew, client,
ETHOS)
•
Treloar, Rance, in press
• Harms – social and economic situations
– social determinants
• Multi-directional marginalisation/exclusion – what can
accompany drug use
– Criminalisation, incarceration, poverty, homelessness
Structural violence in the OST clinic
• The dosing staff, pathologists and receptionist are ensconced behind
bullet proof glass … If there is a long queue your heart falls as you
realise it. You look ahead down the line when you join it. Is it moving
slowly or quickly? Which staff member is dosing? Are they the one for
whom the computer always seems to fail? You ask the person ahead
of you, “what‟s happening?” and 5 or so people turn around and join
in: “they‟ve fucked it” or “they won‟t dose this poor cunt” or “dunno
they‟re talking shit up there” or “dunno there‟s always something”. And
because there is always something, people are incredibly quick to
anger. Frustration boils close to the surface and something like being
called out for a urine test for the third time in 3 weeks just raises the
temperature to boiling-over point and before you know it there is
someone yelling and being issued a warning. It is not easy to
communicate with people behind bullet proof glass without shouting,
mind you.
•
Crawford, 2013, Int J Drug Policy
Symbolic violence
Internalisation of good/bad
•
[The HCV doctor] was literally saying „Look, you‟re never ever going to
be treated here‟. … I wasn‟t a productive member of society. That‟s what
I felt. I wasn‟t someone who was going to make a difference to society,
you know. He had more important patients than me, that‟s what I felt, you
know.
•
•
Rhodes et al., 2013. Sociology of Health and Illness
As far as the actual dosing sites, I think it‟s pretty appalling. It‟s like
you‟re a cow going into slaughter. You‟ve got this line in the morning.
There‟s no cover if it‟s raining. Winter it‟s freezing here. There‟s winds.
There‟s no protection ... [T]he actual atmosphere is very punitive ... it
wouldn‟t be tolerated for any other illness. (Bea, staff, ETHOS)
•
Rance, Treloar, in press
Key question 3
• What does a trusted system look like?
• How to build trust?
– Relationships – shaking up the routine
– Acknowledging power
A trusted system – NSP (confidential, honest)
• none of my information has ever been shouted out
from a rooftop. No one knows that I come here. The
clinic didn‟t tell anyone I came here. So I‟ve got
100% trust here. … And they educated me, you
know… very up front. Mandatory reporting that has
to happen. They‟ll say that, you know? “What you‟re
saying now is a bit „how‟s it going‟, I‟ve got a duty to
have to”… you know? You always know where you
stand, and that‟s something really big in my priorities
in life. You‟ve gotta know where you stand with
someone. (Kat, female, 35)
•
Treloar & Mao (forthcoming)
A trusted system – NSP (best interests)
• They‟re just quite happy to hand over what you
need, and they don‟t look down at you for any
reason sort of thing because they know that you
know, you‟ve got a problem, at least you‟re
prepared to go there and use cleans ones than
end up with more of a problem. (John, male, 51).
What does trust/mistrust look like?
Well, they become gregarious when they come in if they trust you.
They open themselves, they‟ll lean across the counter and they do
all those body signals. Whereas if they don‟t trust you so much, they
tend to sit there and look indifferent towards things and aren‟t
interested in what you‟re saying. They look sideways (NSP staff #3)
I think probably if they don‟t trust the service, they probably won‟t
engage. They‟ll come in …and they‟ll leave really quickly. So you
won‟t actually have much interaction time (NSP staff #2)
Treloar & Mao (forth coming)
What does trust/mistrust look like?
if people are prepared to disclose stuff about themselves and their
private lives and their circumstances …particularly if that information
is sensitive or could lead them in difficult situations. I think if they‟re
prepared to spend time with you and actually engage in
conversation regularly, it‟s often a sign that there‟s some element of
trust. (NSP staff #7)
Treloar & Mao (forth coming)
How to build trust?
• Within the bounds of larger social forces –
relationships with staff are key
• Experiment – consumer participation in drug
treatment (NUAA)
– 3 sites in NSW
– transformative possibilities of different activities
Building trust – having a voice
• We've never had a voice before. And this is the first time
we've actually been asked “how do we feel?” (Robyn,
key consumer)
• I think that the more the staff hears of our problems, like
the little everyday problems of coming here, I think the
more … they can see that you know, you are a human.
(Jason, general consumer)
•
Rance and Treloar (forthcoming)
Building trust – having a voice
• To know the real stories about them. Yeah, the true
worries instead of just asking the routine questions and
answering our questions. Yeah, that's, that's different
than the normal way of communicating between us.
(Gerri, general staff)
• I have just found it has been a positive experience …
People who have been with us for years, they just say
that the relationship is so much better … They feel like
they can talk to us, that they know we‟re available and
the culture has changed more than anything for them.
(Sheryl, general staff)
•
Rance and Treloar (forthcoming)
Building trust - changing the clinic dynamic
• I mean often in the waiting room there's a great chat
going on and it's so noisy the receptionist nearly goes
mad. Everybody's chatting away … I think it's improved
the whole, you know, communication … There‟s a good
feel about the place. (Georgia, key staff)
• The clinic's improved outa sight … it's been going great.
(Clare, key consumer)
Rance and Treloar (forthcoming)
Building trust - power relations in the clinic
• I think it has just created a level-playing field, that‟s what it‟s
done. … It successfully gives people a little bit of power, pride
even – that being able to speak, to not be running against
brick walls all the time; that someone listens to you openly
and freely. … It‟s developed into a relationship where I feel
like I am talking to colleagues, not as a doser and a staff and
that makes a huge difference. (Susan, key consumer)
• It was quite nice to sort of sit in the room, you know, as equals
and have discussions … I was most surprised about how
much of an interest they were taking. (Elle, key staff)
Rance and Treloar (forthcoming)
Building trust (practical assistance/competence,
best interests)
• To be able to assist them with [HCV] … when they hear
that and they hear that there‟s, there's a helping role,
they actually open up a lot more and they start to
become more comfortable. [Interviewer: Isn‟t that
interesting? What do you think, what, what do you think
that‟s about?] Just basically you‟re being proactive
towards them. You‟re actually taking concern in their
welfare. And that you‟re actually going to try and help
them sort of process. …I guess it develops a trust and
that this person does, is concerned. And there‟s support
there, and there‟s help for the client as well. So it all rolls
into one. (Teresa, staff, ETHOS)
Treloar and Rance, in press
Building trust (practical assistance/competence,
best interests)
• I‟ve spent hours in the dosing line chatting to people, remembering
peoples‟ kids‟ names … at first it might have absolutely nothing at all
to do with hep C. You know, “How did you go and where‟s your little
boy? Oh, you‟ve got a broken foot. How did that happen?” …
“You‟ve got a doctor‟s appointment. How did that go?” Things like
that really, really make a difference in developing a trust. That
people feel that they can come and chat to you. And I‟ve done
everything within this room from, you know, looked at boils to check
for nits to looked at scabby feet, and everything in between. Given
advice on sexual health. To establish that I do have information and
I, you know, I don‟t think less of people for whatever they‟re talking
about. And once you‟ve established that relationship, the rest is, is
easy. Once they know you … And word-of-mouth is, if we get new
people here, the people who are already here will say that I‟m okay
to talk to. (Anthea, staff, ETHOS)
•
Treloar, Rance, in press
Trust - turning around symbolic violence
• When it comes to methadone service users they‟re the end of
the food chain. There's no money in drug and alcohol …
They‟re not seen as important … We [in OST] do not offer the
greatest service … It‟s just, you know, dosing people, dosing
people and getting them out … getting through from crisis to
crisis is how we bounce (Remi, staff, ETHOS).
Rance, Treloar, in press
Trust - turning around symbolic violence
• When it comes to methadone service users they‟re the end of
the food chain. There's no money in drug and alcohol …
They‟re not seen as important … We [in OST] do not offer the
greatest service … It‟s just, you know, dosing people, dosing
people and getting them out … getting through from crisis to
crisis is how we bounce (Remi, staff, ETHOS).
• So … when someone comes in and pays them that bit of
attention, it‟s like, “Well hang on, I am worth this. I am
worthwhile. My health is important and it doesn‟t matter how I
contracted hep C or why I‟ve got it. But hey, someone‟s given
a damn about, you know, me and my health”... It‟s not that
stigma of “You‟re on methadone so you‟re not worth it,” it‟s,
you know, “you are worth this.” (Remi, staff, ETHOS)
Rance, Treloar, in press
What does all that have to do with drug Rx?
 Global trust - cumulative effects of social pressures
 Some socially and culturally “invisible”
 Some internalised
 Very large forces – what can clinicians/clinics do?
 Need to guard against feeling paralysed by enormity of social forces
 How can “trustworthiness” be demonstrated?
 Services that are actively anti-discriminatory and
nonstigmatizing -> change expectations of the future and
thereby improve perceptions of the accessibility of other
services.
Strategies – trust building
trust, stigma, social exclusion, symbolic violence, structural violence
•
Personal level
– No judgments; acknowledge efforts to promote health and wellbeing
– Demonstrate/communicate confidentiality/boundaries; explain difference between your
“system” and others
– Acknowledge issues important to client (best interests; vulnerabilities), not just service
•
Organisational level
– Find ways for staff and clients to interact in ways outside of routine
– Find ways to intervene on issues that are important for clients (not just what‟s important for
the service)
– Critical review: are there clashes between best interests of the client and clinic policy?
– Consider peer programs (need sufficient resources to support)
– Embed policies and practices re confidentiality/barriers/conflicts of interest
– Acknowledge power and mistrust, ask clients what will work
•
Systems level
– Develop partnerships with other agencies (trusted by clients) – programs for clients
– Find allies, promoters to champion the system esp from client network
– Understand relationship of clients with other services/systems
– Cost
A final comment
• Being able to trust a service is a remarkable/uncommon
event for people who inject drugs/live with HCV
• Trust is important for better service outcomes – therefore
important at an instrumental level
• But more importantly – a service that recognises the
rights of people to access services, maintain their health
without fear of repercussion
Acknowledgements
Participants in all projects
NSP Project
• Funding: former Sydney West Area Health Service:
• Investigators: Carla Treloar, Limin Mao,
ETHOS
• Funding: NHMRC Partnership Grant (568985); NSW Health
• Investigators: Greg Dore, Paul Haber, Jason Grebely, Carolyn Day, Carla
Treloar, Lisa Ryan, Rosie Thein.
• Site Investigators, Coordinators and Data Managers
Consumer Participation in Drug Treatment
• Funding: NUAA
• Investigators: Jake Rance, Carla Treloar, Hannah Wilson, Brigit Morris
CSRH supported by a grant from AGDOHA
[email protected]
@carlatreloar
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