“I can’t fail. And my son can’t fail.”: Caregiver perspectives on supporting youth to self-manage their HIV in Ndola, Zambia

Adolescents and young adults (AYA, aged 15-24) living with HIV have suboptimal antiretroviral treatment adherence compared to their adult counterparts, raising concerns of poor health and drug resistance. While it is known that AYA require caregiver and family support to successfully transition to HIV self-management, there has been limited engagement with caregivers to this end. To fill this gap, we examined caregivers' experiences of navigating their youth's HIV self-management to better inform interventions that seek to improve AYA's HIV self-care and treatment outcomes. We conducted a thematic analysis using qualitative in-depth interview transcripts from 21 caregivers of AYA living with HIV who participated in the Project Yes! study, which was a randomized control trial to test a clinic-based youth peer mentoring program in Ndola, Zambia. We used inductive and deductive approaches to explore caregiver experiences, roles, and needs related to their youths' HIV self-management. We found that caregivers' commitment and willingness to support their AYA shaped how they considered and prioritized their AYA's health and well-being. Further, caregivers shared their views on approaches to communicating with their AYA, namely the benefit of communication that is gentle, encouraging, and grounded in knowledge of their youth. Finally, caregivers affirmed their desire for their AYA to successfully "take care of [themselves]" and described how to effectively support their AYA to start assuming primary responsibility by giving their youth space to self-manage with caregiver oversight. Our analysis affirms the valuable role caregivers play in youth's HIV self-management. Based on these findings, we offer important insights to encourage and inform future research and interventions that support and engage caregivers to facilitate their AYA's transition to HIV self-management.