‘My Best Friends and My Worst Enemies’: Understanding the Roles of Families in Retaining South African Adolescents Living with HIV in Care

South African adolescents living with HIV (ALWH) are less likely than their child or adult peers to be retained in HIV care. ALWH who are not retained in HIV care are at tremendous risk for poor health outcomes, facing higher rates of HIV-related morbidity, mortality and medication resistance. While there have been remarkable advancements in HIV treatment and ART is more accessible to people living with HIV than ever before, disruptions in the HIV care continuum persist. Thus, there is an urgent need for multi-level interventions aimed at addressing socio-structural barriers to retention in care. Previous research has suggested that familial involvement is critical to ALWH’s treatment success; however, the majority of interventions for this group focus only on individual-level characteristics and change. The purpose of this study was to determine how families are currently involved in efforts to retain ALWH in HIV care and to solicit strategies from ALWH, their caregivers, and local stakeholders to better integrate families in intervention efforts.

We used a semi-structured interview guide to conduct in-depth interviews with 59 ALWH (n=20), caregivers (n=19), and local stakeholders (n=20). ALWH ranged from 13 to 19 years of age. Interviews were digitally recorded, transcribed verbatim, verified by a research team member, imported into a qualitative software program (Atlas 7.0), and analyzed inductively using a qualitative content analytic approach.

Findings revealed several roles that family members served in supporting ALWH, including: reminding them to take their pills; reinforcing notions of personal accountability; providing informational, instrumental, and emotional support; assisting youth when their primary caregiver was unavailable; and normalizing pill taking. While most participants identified their families as sources of support, a number of participants expressed negative familial roles, including being sources of discrimination, ridicule, and discord. Moreover, participants reported that HIV disclosure within families is often challenging, leaving many ALWH with no one with whom they can confide within their social networks, limiting their family’s ability to provide critical support. ALWH suggested that their families assist with retrieving medications from pharmacies and commit to unconditional acceptance, regardless of whether they adhere to their treatment regimens. Results highlight the need for systematic, intergenerational approaches that incorporate personal, social, and cultural factors to HIV intervention efforts for ALWH.