“‘I was still very young’: Agency, Stigma, and Strategic Antiretroviral Therapy for School-going Youth in Rural Africa, Baseline Results of a Qualitative Study”

Johnson-Peretz J, Lebu S, Akatukwasa C, et al. (2022). Journal of the International AIDS Society (JIAS).

“She shared that she is supposed to take her drugs at 8pm and this forces her to carry drugs to class, which she is not comfortable doing. They are usually given a five-minute break and that is when she tries to fix her time with the drugs, which again is not working out so well because everybody shares the break and her friends do not equally want to leave her alone. She ends up missing doses because of that.” (Non-facility based provider, Kenya)

“The children at school always say that I take big pills like those they give pigs. … I started to hate myself.” (male aged 16, Uganda)

Synopsis: This qualitative study conducted among adolescents and young adults living with HIV, their family members and care providers in eastern African communities, elucidates actions AYAH undertake to resist forms of HIV-related stigma. 

Key Findings: Youth resisted stigma through selective disclosure to trusted allies, and invented ways to adhere to ART, leading to an increased sense of agency and better health outcomes. Both older and younger adolescents stressed the importance of support systems at home and among school staff, with older adolescents showing greater ability to direct these relationships and disclosures, while younger adolescents relied on parents or caregivers to pave the way.

Recommendations: Introducing younger adolescents to a peer group of other AYAHs (especially including schoolmates) at the time of disclosure may create an initial support framework for resisting stigma by showing younger adolescents they are not alone. This also creates the linkages between peers, which promotes synchronicity in life-course expectations and may help carry through adherence into adulthood. For older adolescents, their life stage is a key opportunity to establish successful engagement in care by appealing to their growing sense of (self-) responsibility, especially within a context where stigma is a reality. Through modelling opportunities for selective disclosure to teachers, staff and peers, providers can counsel older adolescents on the key life skill of building supportive social and professional networks, while facilitating retention in care as the adolescent becomes an adult.