Pathways to survival: identifying psychosocial, family and service mechanisms to improve anti-retroviral adherence

1.2 million adolescents in Southern Africa are living with HIV (UNICEF, 2012). Antiretroviral medication provides an opportunity for survival and long-term wellbeing, but requires adherence of 80-95%, without which the virus develops resistance to the medication (Paterson, 2000). Poor adherence can lead to illness and death, and as adolescents become sexually active they can pass on drug-resistant HIV. The very limited research shows exceptionally low rates of around 20% of adolescents maintaining adherence (Nachega, 2009). Lifetime daily adherence is strongly influenced by psychological, social and family context. But the very limited research on adolescent antiretroviral adherence is almost exclusively biomedical, and in high-income countries.

This study was a direct collaboration with UNICEF, UNAIDS and Departments of the South African Government, with sub-Saharan African NGOs. It addressed a major social science research gap by identifying risk and resilience-promoting pathways (Rutter, 2005) for adherence amongst adolescents in Southern Africa. The study tracked adolescents through the health system over two years, using rigorous virologic and other measures of adherence, with a theoretical framework of interlinking risk and resilience-promoting factors for adherence, including mental health, family and cultural factors, romantic relationships and health services experiences.

A multidisciplinary approach is necessary to understand this complex phenomenon, and this study combined longitudinal quantitative and qualitative methods with 575 adolescents, recruiting from health facilities and including both clinic attendees and defaulters. Findings contributed to understandings of adolescent development and resilience in the context of a multifaceted and stigmatised disease. Furthermore, impact was ensured by active policy and capacity-building collaboration, engagement with health services, NGOs, international HIV funders, and the South African government. By identifying potentially modifiable intervening factors for improving adolescent adherence, and by effectively disseminating these findings, this study informed evidence-based interventions for an expanding and highly vulnerable group.

DSPI PI: Lucie Cluver

Funded by: Nuffield Foundation

Completed: 2017