Adolescent HIV self-management: lived experiences of adolescents, caregivers, and health care workers in a South African context

Abstract

Adolescence is a complex developmental phase, made more complex by chronic disease. When dealing with treatment and the health impact of chronic diseases, adolescents need to learn to self-manage an array of challenges. Unfortunately, there is a gap in the literature related to chronic disease self-management in adolescents living with HIV. We describe the phenomenon from the perspectives of adolescents, caregivers, and health care workers (HCWs) in South Africa. Individual interviews were conducted with 6 adolescents, 6 caregivers, and 6 HCWs, followed by 5 adolescent focus groups. Interpretive phenomenology guided exploration of social and cultural experiences and found that adolescent self-management required an understanding of HIV and hope for the future. Adolescents also needed skills to prioritize and negotiate care while managing stigma. These processes were facilitated by love and support, primarily from immediate family, and by the adolescent engaging with family, HCWs, and peers.