Background
This paper examines how
family and social relations facilitate and inhibit adherence to
antiretroviraltherapy (ART) for people living with HIV (PLH) who have
underlying substance use disorders and are transitioningto the community
post-incarceration.
Methods
Combining the methods of
inductive close reading and constantcomparison, we analyzed the data from 30
semi-structured interviews of PLH who had recently transitioned to thecommunity
within the previous 90 days.
Results
Three central themes
were anticipated as important socialrelationships post-release: self-reported
family, friends and clinicians. Among these, four sub-themes (social isolation,
‘double jeopardy’, search for belonging, and trust and respect) emerged,
highlighting how they impacted ART adherence. Post-release, participants
returned to resource-poor communities where they experienced socialisolation.
ART adherence was enabled by having a purpose in life, which correlated with
having robust family support structures. Many former prisoners felt that a
chasm between them and their families existed, both because of HIV stigma and
their addiction problems. In this context, relationships with untrustworthy
friends from their druguse networks led to relapse of drug use and risky
behaviors, jeopardizing participants’ ART adherence and persistence. To avoid
the double jeopardy, defined as seeking friends for support but who were also
the ones who contributed to drug relapse, participants searched for new social
anchors, which often included their healthcare providers who represented
trusted and respected persons in their life.
Conclusions
While some former
prisoners perceived doctors as uncaring and their relationships asymmetrical,
positive relationships with these providers,when respect and trust was mutual,
reinforced the participants’ sense of belonging to what they called ‘the world
that don’t do drugs’ and motivated them to adhere to ART...
Oftentimes, participants reported experiences of feeling
uncared for, ignored, and just not taken seriously by some clinicians they had
encountered. They were frustrated by asymmetrical relationships where they as
patients felt excluded from decisions and ‘acted upon’ by their providers.
Encounters with dismissive medical staff reinforced participants’ suspicion and
mistrust in clinicians, whom they regarded as heralds of bad news. Participants
resented when their questions to health-care providers went unanswered and
their reaction was to withdraw, or even avoid these professionals altogether:
They took my blood. I want to know why they took the
blood. I asked them. They gave me some little skinny piece of paper that said
they took this, this, this, this, and this. And then they circled this thing,
and nobody tells me what the circle’s for. I got half answers.
I don’t like doctors period. This is my first time
dealing with anything in a white coat. I don’t want to hear what he have to
say. ‘Cause I already have too much to carry for me to hear another bad news.
Not all clinicians, however, were painted with this same
brushstroke. Participants distinguished between ‘caring’ and ‘uncaring’
clinicians, both within the prison medical system and in the community:
There’s some staff that honestly care about the
well-being of a person. And there some that just don’t care. “You're just here
to be warehoused. Get out of my way. I'm just here to do my eight hours”.
Some doctors, I think, try to talk to you, include you in
to whatever they’re trying to show you to help you live longer. Some doctors
not. They just want you in and out.
Oftentimes, a positive encounter with a ‘caring’ clinician
who treated the patient with respect happened in the context of incarceration,
was associated with HIV diagnosis and treatment, and turned into a
long-standing relationship. In the context of such symmetrical relationships,
participants trusted their doctors, felt positively about shared-decision
making and ownership, and felt accepted and safe to be honest about their
vulnerabilities, including their high risk behaviors, all of which were ultimately
important for their adherence to ART:
[My] doctor very clearly explains things that he’s doing
to [me]. We have a good relationship. They sent him to me almost eight years
now, and we just clicked. He likes me. I like him. I'm honest. I don’t play
games. If I'm doing something, I’ll tell him. I'm not gonna lie to him...
Full article at: http://goo.gl/4Z2XHu
Department of
Internal Medicine, Section of Infectious Diseases, AIDS Program, Yale
University School of Medicine, 135 College Street, Suite 323, New Haven, CT 06510-2283
USA
Division of
Epidemiology of Microbial Diseases, Yale University School of Public Health,
New Haven, CT USA
Harvard Medical
School, Boston, MA USA
Julia Rozanova, Phone: 203.737.2883, Email: ude.elay@avonazor.ailuj.
More at: https://twitter.com/hiv_insight
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