Taking oral and vaginal antiretrovirals for HIV prevention, and the fear of a ‘spoilt identity’

Perspectives on use of oral and vaginal antiretrovirals for HIV prevention: the VOICE-C qualitative study in Johannesburg, South Africa.

van der Straten A, Stadler J, Luecke E, Laborde N, Hartmann M, Montgomery ET. J Int AIDS Soc. 2014 Sep 8;17(3 Suppl 2):19146. doi: 10.7448/IAS.17.3.19146. eCollection 2014.

Introduction: Antiretroviral (ARV)-based pre-exposure prophylaxis (PrEP) is a promising new HIV prevention strategy. However, variable levels of adherence have yielded mixed results across several PrEP trials and populations. It is not clear how taking ARV - traditionally used for HIV treatment - is perceived and how that perception may affect the use of these products as preventives. We explored the views and experiences of VOICE participants, their male partners and community members regarding the use of ARV as PrEP in the VOICE trial and the implications of these shared meanings for adherence.

Methods: VOICE-C was a qualitative ancillary study conducted at the Johannesburg site of VOICE, a multisite, double-blind, placebo-controlled randomised trial testing tenofovir gel, oral tenofovir and oral Truvada(R) for HIV PrEP. We interviewed 102 randomly selected female VOICE participants, 22 male partners and 40 community members through in-depth interviews, serial ethnography, or focus group discussions. All interviews were audiotaped, transcribed, translated and coded thematically for analysis.

Results: The concept of ARV for prevention was understood to varying degrees across all study groups. A majority of VOICE participants understood that the products contained ARV, more so for the tablets than for the gel. Although participants knew they were HIV negative, ARV was associated with illness. Male partners and community members echoed these sentiments, highlighting confusion between treatment and prevention. Concerned that they would be mistakenly identified as HIV positive, VOICE participants often concealed use of or hid their study products. This occasionally led to relationship conflicts or early trial termination. HIV stigma and its association with ARV, especially the tablets, was articulated in rumour and gossip in the community, the workplace and the household. Although ARV were recognised as potent and beneficial medications, transforming the AIDS body from sickness to health, they were regarded as potentially harmful for those uninfected.

Conclusions: VOICE participants and others in the trial community struggled to conceptualise the idea of using ARV for prevention. This possibly influenced willingness to adopt ARV-based prevention in the VOICE clinical trial. Greater investments should be made to increase community understanding of ARV for prevention and to mitigate pervasive HIV stigma.

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Editor’s notes: VOICE C was a qualitative ancillary study looking at the experiences of women participating in the VOICE clinical trial, testing the efficacy of pre-exposure prophylaxis (PrEP) and topical microbicides. Other work published by these authors has focused on the challenges of adherence to these products. This paper investigates the views and experiences of the women participants, male partners and community members on PrEP and the microbicide gel. Women using the microbicide gel preferred it to the tablet, perhaps because of the association of tablets with being HIV-positive. However, half of the women using the gel were reported to be unaware that the gel contained antiretroviral drugs (ARV), which may also have been a factor in this preference. A number of women taking tablets worried about being thought to be HIV-positive if seen with the drug. Another of their and their partner’s concerns was that the drug may not be safe for people who were HIV negative. The authors note that the strong association of ARV with an HIV-positive status challenged adherence and trial participation. The findings point to the need for careful attention to provide sufficient information to engender participant understandings of trial products and procedures. Also, beliefs in the wider community where trials take place need to be understood, and where possible addressed, not only to support trial participation, but also to mitigate pervasive HIV stigma.

South Africa
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