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.
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.
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.
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: firstname.lastname@example.org.
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