I'm taking PrEP for myself and not for people: PrEP disclosures influence adherence journeys for adolescent girls and young women in South Africa

BACKGROUND: Prevention effectiveness of oral PrEP is directly associated with levels of adherence. To improve the prevention-effective-use of PrEP, we explored behavioral, social and community factors associated with PrEP disclosure and use among adolescent girls and young women (AGYW).
METHODS: Individual in-depth interviews (IDI) were conducted with 40 AGYW (aged 16-25 years) participating in the Community PrEP study in Eastern Cape Province, South Africa. IDI guides were developed using Social Practice Theory (SPT). IDI domains included: PrEP knowledge and use, study site experiences, PrEP actions plans and influences, and PrEP discussions in social spaces. AGYW with '¥12 months of study participation were interviewed, with equal representation of AGYW with high and low PrEP adherence measured via tenofovir-diphosphate (TFV-DP) blood concentrations. IDIs were conducted in isiXhosa, audio-recorded, transcribed and translated for analysis using an iterative process guided by SPT to assess factors influencing PrEP disclosure and adherence.
RESULTS: Most participants (78.4%) were enrolled in high school, lived with family (97.3%), had a current partner (51.4%), and were sexually active (64.9%) within the last year. All participants considered their high HIV risk and future goals as primary PrEP motivators. Participants described PrEP disclosure events to family members, friends and boyfriend/partners, with 91.7% of those with high TFV-DP blood concentrations disclosing to all three categories, while only 57.9% of those with low TFV-DP blood concentrations disclosed to all three. Receiving PrEP support from multiple individuals helped in navigating PrEP disinterest from others, lack of PrEP education within the community, and mistrust in relationships. After disclosure, gossip and PrEP myths were not influential for those with multiple disclosures and sources of support. All participants described taking PrEP as an independent journey, but with support from different people in their lives.
CONCLUSIONS: PrEP initiation was strongly influenced by one's future goals, while PrEP adherence was seen as an independent journey influenced by disclosures to key individuals in different social spaces. AGYW with high TFV-DP blood concentrations described larger circles of assembled support. Prevention-effective-use of oral PrEP among AGYW may be dependent on building disclosure skills to develop a PrEP support system.