Motivations for starting and stopping PrEP: experiences of AGYW in the HPTN 082 study


BACKGROUND: Consistent daily use of oral pre-exposure prophylaxis (PrEP) for prevention of HIV infection presents a significant challenge for adolescent girls and young women (AGYW). We explored AGYW's motivations for starting, stopping, and restarting PrEP.
METHODS: HPTN 082 was an open-label PrEP study that enrolled AGYW between 2016 and 2018 at sites in Johannesburg and Cape Town, South Africa and Harare, Zimbabwe. Participants were aged 16-25 years, HIV-negative, sexually active and PrEP-eligible. Participants were randomised to receive standard adherence support (counselling, two-way SMS, monthly adherence clubs) or enhanced support with drug-level feedback plus the standard adherence support. All attended quarterly follow-up visits over 52 weeks. Serial in-depth interviews were conducted at the 13- and 26-week study visits. Participants were purposively sampled from each site to include PrEP adherers, decliners, and special cases such as those reporting social harms. A Grounded Theory approach was used to guide the analysis.
RESULTS: There were 67 AGYW interviewed (Harare, n=25, Johannesburg, n=22, Cape Town, n=20) of which 66% (n=44) reported declining, delaying, pausing, intentionally skipping and/or discontinuing PrEP. Of those that skipped or paused PrEP, more than half (n=25) restarted PrEP during the trial. In decisions to initiate PrEP, almost all AGYW were motivated by perceived risk of HIV, and many were influenced by the presence or absence of support from family, peers and partners. Changes in HIV risk perception were less important in decisions to stop and restart PrEP. AGYW most commonly cited HIV- and PrEP-related stigma as motivation for stopping PrEP. The fear or experience of side effects caused some participants to decline, delay or stop PrEP. Motivations for restarting PrEP included retention events, encouragement from clinic staff, and support from female relatives.
CONCLUSIONS: HIV risk perception only influenced some AGYW's decisions to stop and restart PrEP use. The dominant role of HIV stigma and social influence in decisions to stop and restart PrEP suggest the need for community and family-level interventions geared towards destigmatizing HIV prevention, and the potential benefit of embedding PrEP delivery within youth friendly services that create opportunities for peer support.

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