I needed somebody to encourage me to take it [PrEP], maybe it would have protected me and the baby

Abstract

BACKGROUND: South Africa has the highest number of people living with HIV globally, with adolescent girls and young women (AGYW) being disproportionately affected. Pregnant AGYW are particularly vulnerable to HIV due to hormonal changes, leading to increased risks of HIV transmission, including mother-to-child transmission. Pre-exposure prophylaxis (PrEP) is recommended to prevent HIV in this population, but concerns and lack of knowledge about its safety hinder uptake and continuation during pregnancy.

METHODS: This qualitative sub-study was part of a cluster-randomized controlled trial in Tshwane, South Africa, involving 12 public health clinics. The parent study aimed to enroll AGYW aged 16-24 who were HIV-negative, reported to have had condomless sex, and were interested in taking PrEP. For this sub-study, 25 AGYW who became pregnant after enrollment were invited, and 16 consented to participate in in-depth interviews. Journey mapping was used to explore participants' experiences with PrEP before and during pregnancy. Interviews were conducted in English, Sesotho, and Setswana, then transcribed and coded for analysis. Inter-coder reliability reached a Krippendorff Cu-Alpha score of 0.84. The journey maps were combined and depicted graphically to understand the AGYW PrEP use journey during pregnancy.

RESULTS: Most AGYW discontinued PrEP upon discovering their pregnancy due to concerns about potential risks to the unborn baby despite evidence showing PrEP is safe during pregnancy and breastfeeding. Participants experienced common PrEP side effects such as nausea, which they found difficult to distinguish from pregnancy-related symptoms. Lack of support from healthcare providers and family members further contributed to their decision to stop PrEP. Clinicians, often unfamiliar with updated guidelines recommending PrEP for pregnant women, advised discontinuation. AGYW expressed a need for greater support and reassurance from both healthcare providers and their families.

CONCLUSION: Despite the safety of oral PrEP during pregnancy, AGYW in South Africa lack the necessary information and support to continue its use. Empowering healthcare providers and family members to offer informed guidance and reassurance, AGYW may gain the confidence needed to make critical HIV prevention decisions during pregnancy. Targeted strategies, such as provider training with community PrEP education, are essential to protect pregnant AGYW's well-being and reduce their HIV risk.