Adolescent girls and young women (AGYW) in sub-Saharan Africa experience delayed linkage to and poor retention in HIV care. Identifying and addressing specific barriers in HIV care programming is important to achieving the upgraded UNAIDS 95-95-95 targets and epidemic control. We examined these challenges among 103 HIV-positive AGYW in and out of HIV care in communities around Lake Victoria in western Kenya as part of a larger qualitative study to identify drivers of HIV testing and HIV care utilisation in key populations. We used the social-ecological model to guide development of interview guides. Individual-level barriers included denial and forgetfulness and gendered household responsibilities, medication side effects, especially if taken without food, pills being too big and difficult to swallow and the burden of a daily medication-taking regimen. Interpersonal barriers included troubled family relationships and pervasive fears of stigma and discrimination by friends and family. Communitylevel barriers were stigmatising attitudes toward people living with HIV. Health-system barriers included negative provider attitudes and confidentiality breaches. At the structural level, participants noted high costs due to long travel times to facilities, long clinic waiting times, household food insecurity and school and work commitments. AGYW's limited decision-making autonomy due to age and gender norms, including their reliance on the authority of older adults, makes these barriers especially troubling. Innovative treatment approaches that take into account the unique vulnerabilities of AGYW are urgently needed.
Keywords: ART medication; HIV care providers; Lake Victoria; fishing communities; medication adherence; patient-centred care.