‘Why Do I Have to Miss so Much School?’ Clinic Experiences of South African Adolescents Living with HIV

The poor retention of adolescents living with HIV (ALWH) in HIV care has been well documented in low-resource settings. Despite the fact that South Africa has the largest antiretroviral treatment program in the world, a recent study estimated that, of the 867,000 South African ALWH (ages 15-24), 14% were on ART, 12% had been retained in HIV care 1-2 years after ART initiation; and only 10% were virally suppressed. These concerning figures emphasize the urgent need for researchers to identify socio-structural factors that contribute to poor HIV care retention within this group. Over the past 5 years, adolescents’ experiences receiving sexual and reproductive healthcare has received more attention, with researchers and stakeholders advocating for staff education and sensitivity training to facilitate youth-friendly services in South Africa; however, there has been significantly less attention paid to the clinic experiences of adolescents seeking HIV treatment. Therefore, the purpose of the current study was to characterize the clinic environments of ALWH to identify potential contributors to poor retention in care.

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 identified several themes associated with ALWH’s clinical experiences related to HIV care retention, including: 1) concerns regarding clinic appointment burden; 2) overcrowding and long wait times; 3) social and structural discrimination and stigma; 4) lack of healthcare integration leading to involuntary disclosure; and 5) and clinic proximity. Taken together, the results of this study suggest that ALWH’s clinic experiences significantly influence their ability to remain in HIV care and adherence to their treatment regimens. Such realities call for innovative approaches to improve clinic environments to support ALWH as the progress along the HIV treatment cascade. Strategies and future directions will be discussed.