"I will start treatment when I think the time is right": HIV-positive gay men talk about their decision not to access antiretroviral therapy

Abstract

In a qualitative study, 20 HIV-infected Australian gay men were interviewed about their decision not to access antiretroviral drug therapy. The main reasons given for the decision were fear of side effects; fear of long-term damage to body organs; the inconvenience of the treatment regimens; belief that the regimen's demands would be a threat to morale; and belief that there was no reason to start therapy in the absence of AIDS-related symptoms. Actions taken by the men to monitor and maintain their health included seeing a doctor regularly; having regular T-cell and viral load tests; and trying to maintain a positive outlook by not letting HIV/AIDS 'take over' their lives. Almost half the men considered they had been subjected to unreasonable pressure to access therapy and there was considerable pride at having resisted this pressure. The findings suggest that the men disagreed with the biomedical model for managing HIV/AIDS only on the question of if and when to access therapy. They also suggest that underlying the men's dissent from the biomedical model was a different mode of thinking than is required by the model: while the model demands thinking that is abstract, the men focused strongly on factors close to the 'here and now' of immediate experience. The practical implications of the findings are explored.

Starting or Changing Therapy – A Prospective Study Exploring Antiretroviral Decision–Making

“…An active role was also found by others [26]. In addition, our study shows that physicians and nurses are important partners and therefore strongly influence the readiness of HIVinfected patients for therapy.…”

Medication-Related Barriers to Entering HIV Care

“…Among patients who have entered HIV care, fear of side effects, mistrust of medications and health care workers, concerns about the effects of medications on quality of life, and a preference for alternative medicine and self-care have been associated with lower acceptance of ART, 11,[13][14][15][16][17][24][25][26] although at least one study found no association between conspiracy beliefs and access to care. 27 However, research on the role of mistrust of medications and health care workers as barriers to entering care has been limited.…”

“…For example, studies have documented reluctance to take ART and fears about medication side effects. [10][11][12][13][14][15][16][17] However, because almost all studies have focused on HIV-infected persons already engaged in medical care, little is known about how medication-related factors influence prospective decisions to enter care. 18,19 An important exception is a recent study by Pollini and colleagues 20 who found that, compared to those in care, persons who had never initiated HIV care were more likely to mistrust HIV medications and health care providers.…”

Attitudes and Beliefs About Hepatitis B Vaccination Among Gay Men: The Birmingham Measurement Study

“…Among self-identifying and non-self-identifying gay men, constructs of the health belief model have been used to understand and explain sexual risk behavior (Aspinwall, Kemeny, Taylor, Schneider, & Dudley, 1991;Dawson, Fitzpatrick, Boulton, McLean, & Hart, 1992;Simon, Morse, Balson, Osofsky, & Gaumer, 1993;Wulfert, Wan, & Backus, 1996), HIV testing behavior (Maguen, Povinelli, Remafedi, & Tao, 1996), HIV treatment initiation (DiFranceisco et al, 1998), and risk-reduction intervention participation and completion (Gold & Ridge, 2001). When applied to HBV vaccination behavior, the health belief model postulates that in order for individuals to participate in HBV vaccination, they must believe: (a) getting vaccinated is not discouraged by insurmountable barriers (perceived barriers); (b) getting vaccinated against HBV would be beneficial (perceived benefits); (c) contracting HBV would have a negative impact on their lives (perceived severity); and (d) they are personally susceptible to HBV infection (perceived susceptibility).…”