The reasoning behind decisions not to take up antiretroviral therapy in Australians infected with HIV

Abstract

A substantial minority of HIV-infected Australians are not taking antiretroviral drugs. This study investigated the reasons behind their decision not to do so. Anyone who was HIV-infected but not taking antiretroviral drugs could participate. A self-administered, anonymous questionnaire was used, the principal recruitment method being through insertion of the questionnaire into gay community newspapers in Sydney and Melbourne. All respondents were asked questions covering demographics, previous AIDS-defining illnesses, T-cell and viral load monitoring, and previous use of antiretroviral drugs. In addition, respondents who had considered going on antiretroviral treatment, but then decided not to do so, were given a list of possible reasons for their decision and asked to indicate how much each played a role in their thinking. Of the 270 respondents, the great majority were gay men. One-eighth had experienced AIDS-defining illnesses. Two-thirds had recently had T-cell and viral load tests. One-third had taken antiretroviral drugs previously. Over two-thirds had considered antiretroviral therapy, most having given the matter quite some thought. Reasons for not taking up therapy did not differ greatly at different stages of HIV disease. The most common individual reason was fear of side effects. Important themes that emerged from factor analysis of the reasons data included distrust of conventional medical approaches to treatment, practical problems associated with taking antiretroviral drugs, unpleasant thoughts that being on therapy would evoke, and acceptance of the idea of dying. The findings can be used by doctors and counsellors to help patients clarify and evaluate their concerns about antiretroviral therapy.

‘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

“…As Pound has argued, research on consumer 'resistance' to taking medicine has typically focused on identifying false or faulty perceptions of meanings, which means that 'the more mundane issues about the physical reality of medicines and the effects they have on peoples' bodies and minds are obscured.' 52 Thus, it has to be recognized that fears consumers may hold about an issue such as 'side effects,' widely reported in the research from Australia and elsewhere, 23,25,28,30 are not simply misguided concerns that need to be corrected, but are legitimate fears based on the very real possibility (and sometimes personal experience) of a treatment having unintended effects. It also reveals the social context of such fears, when a problem such as 'not feeling well' has significant implications for a person's functional capacity to fulfil social and economic roles, such as working, caring for loved ones, or simply feeling alert and active in everyday life.…”

“…There is a large body of literature on psychological barriers to ART initiation, which places particular weight on the notion that readiness for HIV treatment requires full 'acceptance' of one's HIV-positive status. 24,25 There are a number of 'stages of readiness' models, 59 but the one proposed by Kremer et al argues that treatment use and adherence moves through five stages: precontemplation, contemplation, preparation, action and maintenance, and relapse. 36 While this model is cyclical and recognizes the likelihood of 'failures' in treatment adherence, it nonetheless is based upon an assumption of temporal linearity and forward movement across these stages, which does necessarily fit with the ways our participants explained their views or experiences, of treatment.…”

“…17 Qualitative studies have described the views of particular subpopulations, including recently diagnosed gay men 23 and women, 24 providing updated information to support the number of important research articles published on reasons for non-use in the years following the introduction of effective combination ART. [25][26][27] All of these early studies identified key reasons for non-use as including fear of short-and long-term side effects, concerns about the safety and effectiveness of pharmaceutical treatments, doubts about the need to commence treatment, and reluctance to commit to a daily medication regimen. Similar reasons for non-use have been reported in research conducted in relatively comparable settings including the UK, 28 Germany, 29 Poland, 30 the USA, [31][32][33] and Canada.…”

To Take or Not to Take: Decision-Making About Antiretroviral Treatment in People Living with HIV/AIDS

“…They found that patients considered more than surrogate markers (i.e., CD4, viral load) and HIV/AIDS symptoms in their decision: doubts about personal necessity, concerns about adverse effects of ART, quality-of-life issues, distrust of ART and the medical system, preference for complementary and alternative medicine (CAM), and the attitude toward death were all associated with the decision to decline ART. 1,4,7 In addition to the small sample size and focus on gay men, these studies only examined PLWH declining ART. There is not much knowledge about the decisional criteria of PLWH accepting ART.…”

The Degree of Readiness among a Population of HIV Infected Patients in Sweden

“…The most common reason for refusing treatment was due to not feeling ready for adherence and a fear of side effects. Side effects were the most common reason for refusing to start treatment in a quantitative study [42]. In another study Raveis et al [43] females who have delayed seeking care over 3 months were interviewed.…”