The influence of HIV‐related stigma on PrEP disclosure and adherence among adolescent girls and young women in HPTN 082: a qualitative study

Abstract

Introduction Stigma and disclosure concerns have been key barriers to oral pre‐exposure prophylaxis (PrEP) adherence for African adolescent girls and young women (AGYW) in efficacy trials. We aimed to understand the impact of these factors among African AGYW in an open‐label PrEP study. Methods HPTN 082 was an open‐label PrEP study among AGYW (ages 16 to 24) in Harare, Zimbabwe, and Cape Town and Johannesburg, South Africa from 2016 to 2018. Women starting PrEP were randomized to standard adherence support (counselling, two‐way SMS, monthly adherence clubs) or standard support plus drug‐level feedback. Serial in‐depth interviews were conducted among 67 AGYW after 13‐week and 26‐week study visits to explore experiences of stigma, disclosure and PrEP adherence. We analysed data by coding transcripts and memo‐writing and diagramming to summarize themes. Results AGYW described stigma related to sexual activity (e.g. “people say I'm a prostitute”) and being perceived to be living with HIV because of taking antiretrovirals (e.g. “my husband's friends say I'm HIV infected”). Participants who anticipated stigma were reluctant to disclose PrEP use and reported adherence challenges. Disclosure also resulted in stigmatizing experiences. Across all sites, negative descriptions of stigma and disclosure challenges were more common in the first interview. In the second interview, participants often described disclosure as an “empowering” way to combat community‐level PrEP stigma; many said that they proactively discussed PrEP in their communities (e.g. became a “community PrEP ambassador”), which improved their ability to take PrEP and encourage others to use PrEP. These empowering disclosure experiences were facilitated by ongoing HPTN 082 study activities (e.g. counselling sessions, adherence clubs) in which they could discuss PrEP‐related stigma, disclosure and PrEP adherence issues. Conclusions Stigma and disclosure challenges were initial concerns for African AGYW newly initiating PrEP but many were empowered to disclose PrEP use over their first six months of PrEP use, which helped them cope with stigma and feel more able to take PrEP regularly. PrEP programmes can foster disclosure through community and clinic‐based discussion, adherence clubs and activities normalizing sexual behaviour and PrEP use, which can reduce stigma and improve PrEP adherence and thus effectiveness.

Exploring the Use of Oral Pre-exposure Prophylaxis (PrEP) Among Women from Durban, South Africa as Part of the HIV Prevention Package in a Clinical Trial

“…This contrasts with HPTN 082 where only about 40% of women planned to disclose PrEP use [19]. Stigma has been associated with having a negative influence on both the disclosure of PrEP use and continuation [22]. Five women in our study discontinued PrEP due to the influence of the partner or their mother.…”

Incentives conditioned on tenofovir levels to support PrEP adherence among young South African women: a randomized trial

“…Persistence with contraception has also been difficult for African AGYW with 40% to 65% persistence at one year for hormonal contraceptive methods [7]. PrEP persistence may be more challenging than contraception given the lack of familiarity with antiretrovirals for prevention, stigma from PrEP being misperceived as taking antiretrovirals for treatment [8], and changing partnerships and perceived prevention need [9].…”

Thetha Nami: Participatory development of a peer-navigator intervention to deliver biosocial HIV prevention for adolescents and young men and women in rural South Africa

“…Our study show that internalised and externalised HIV stigma and social norms around adolescent and youth sexuality remain a huge challenge to delivering HIV prevention, even in these high HIV burden rural settings [35][36][37]. Young people involved in this research brought a nuanced understanding of the intersection between poverty and lack of opportunity, and the gender and intergenerational power imbalances to the intervention development process [38,39].…”