Family contributions and challenges to HIV care support among youth in rural Kenya and Uganda during the SEARCH-Youth study.

Adolescents and Young Adults with HIV (AYAH) rely on caregiver support to achieve optimal HIV treatment outcomes. We sought to understand how caregivers contribute to engagement in care and ART adherence to inform culturally appropriate ways to better support AYAH at the family level in East Africa. We conducted a combined thematic and framework analysis of in-depth, semi-structured interviews among youth (n = 113) systematically drawn from 8 communities, balanced by age (15-17 vs 18-24 years), sex, and HIV care status; their family members (n = 51); and providers from two intervention clinics per region (n = 45). We interviewed youth at baseline (June to December 2019; n = 83), one-year follow-up (n = 76) and second-year follow-up (for previously interviewed youth; n = 46); and family members at baseline (n = 24) and year one (n = 27). Conditions challenging care engagement were a lack of coping strategies and communication skills among family members, and marital relationship instability. Family conditions supporting engagement included learning how to access medication on one's own, adoption by relatives, sibling support through adherence reinforcement, and spousal support via medication reminders, transportation, and a stable psychosocial presence. Additionally, providers are positioned to recognise cross-communication between guardians and youth around HIV care needs and broker support from caregivers and spouses.