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

Abstract

IntroductionAntiretroviral (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.MethodsVOICE-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® 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.ResultsThe 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.ConclusionsVOICE 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.

Stakeholder engagement to informHIVclinical trials: a systematic review of the evidence

“…In contrast, fewer studies conducted stakeholder engagement in middle‐ (30 studies; 27.8%) 71, 72, 73, 74, 75, 76, 77, 78, 79, 80, 81, 82, 83, 84, 85, 86, 87, 88, 89, 90, 91, 92, 93, 94, 95, 96, 97, 98, 99, 100 and low‐income (nine studies; 8.3%) 101, 102, 103, 104, 105, 106, 107, 108, 109 countries. The location of stakeholder engagement could not be discerned in six studies (5.6%) 110, 111, 112, 113, 114, 115, and fifteen studies (13.9%) 16, 24, 116, 117, 118, 119, 120, 121, 122, 123, 124, 125, 126, 127, 128 conducted stakeholder engagement in multiple countries at different income levels.…”

“…All five of these studies were published from the year 2005 onward, suggesting more recent diversification of stakeholder engagement methods. Additionally, many studies used a combination of both individual and group methods for stakeholder engagement; for example, 19 studies (17.6%) paired focus group discussions with stakeholder interviews 5, 16, 27, 32, 33, 79, 82, 89, 90, 96, 98, 100, 101, 106, 108, 109, 116, 125, 128.…”

Multipurpose prevention technologies: the future of HIV and STI protection

“…Adherence issues observed in HIV prevention product trials [53-55] will certainly need to be addressed in MPT trials. Another challenge will be determining the control products in these trials, or if oral preexposure prophylaxis (PrEP) will need to be incorporated into these trials.…”

Divergent adherence estimates with pharmacokinetic and behavioural measures in the MTN‐003 (VOICE) study

“…Indeed, findings from two qualitative ancillary studies indicate that participants were motivated to enrol and stay in VOICE for the quality health care, regular HIV testing, and other benefits, but were fearful of using the investigational products, which contained ARVs, so that they likely concealed their poor adherence to remain in the trial [40,42,43]. This occurred despite implementing a participant-centred, need-based, non-judgmental approach to product adherence counselling during VOICE, where we were striving for accuracy and honesty [44].…”