‘Not Until I'm Absolutely Half-Dead and Have To:’ Accounting for Non-Use of Antiretroviral Therapy in Semi-Structured Interviews with People Living with HIV in Australia

Abstract

Current debates regarding the use of antiretroviral therapy (ART) to promote both individual-and populationlevel health benefits underscore the importance of understanding why a subpopulation of people with diagnosed HIV and access to treatment choose not to use it. Semi-structured interviews were conducted between 2012 and 2014 with 27 people living with HIV in Australia who were not using ART at the time of interview. Analytic triangulation permitted an appreciation of not only the varied personal reasons for non-use of treatment, but also underlying views on HIV treatment, and the ideal conditions imagined necessary for treatment initiation. Policy goals to increase the number of people with HIV using ART must recognize the diverse explanations for nonuse of ART, which include concerns about the various impacts of committing to lifelong pharmaceutical treatment use. Our research identified distinctive subgroups among people who are not using antiretroviral therapy, with a range of individual and social needs that may affect treatment decisions. These findings challenge assumptions about treatment non-use in resource-rich settings, revealing persistent consumer fears about the potent and unknown effects of HIV medications that deserve greater recognition in policy debate on treatment uptake.

Living with HIV in regional Queensland: social ties, care and support in managing a long-term complex chronic illness

“…High quality Australian studies of HIV that use social research methods have been conducted by Sue Kippax, Christy Newman, Asha Persson, and Julie McLeod [27][28][29][30][31][32][33][34][35][36]. However, there is a paucity of HIV social research conducted with positive people in regional areas and using longitudinal methods.…”

“…This prevailing discourse around HIV represents only an element of a wide spectrum of HIV experiences. Even in highincome settings some positive people experience geographic, economic and social barriers to HIV care [24,25,33,[62][63][64][65][66][67][68].…”

“…Hutchinson and colleagues (1994) who discussed multiple ways in which participating in an interview may benefit the participant, including: the interview being an opportunity for a 33 Previously discussed in chapter one catharsis, self-acknowledgement and validation; contributing to a sense of purpose;…”

“…There is an emerging interest in qualitatively exploring positive people's lived experience around ARTs [24,33,[62][63][64][65][66][67][170][171][172][173][174] yet qualitative literature is scarce, in particular in high-income countries such as Australia [33]. Chambers and colleagues conducted a scoping review of the literature around factors influencing ART adherence (2014) and only three out of 38 studies included in that review used qualitative or mixed methods [170].…”

“…Some of the key themes emerging from the qualitative literature around cART include: lack of provider's clear recommendation to (re)start treatment [65]; not experiencing HIV symptoms [33,62,64]; persistent fears about the unknown medical side effects of ART [33,171,172]; and experiencing these side effects [66,174]. Questioning/ distrust towards biomedicine [33,171,172]; protecting a way of life and seeing ART as weakening one's autonomy [33] or as surrendering to illness [172] and seeing ART as an unwanted reminder of disease [33,62] were also noted.…”