Conceptualising Adolescent HIV Self-Management in a South African Context

Background:Many adolescents are living with HIV globally and in South Africa (UNICEF 2013; De Wet et al. 2014). Challenges in clinical management of adolescents include managing HIV related problems and motivating them to adhere to a lifelong treatment regime, which are compounded by the physical and psychological changes which occur during adolescence (Mofenson & Cotton 2013). Little is known about the healthcare needs of adolescents living with HIV in low resource, high HIV burden settings. These settings have contextual specific issues such as poverty, family and community violence, altered family structures and low education levels that may impact on the health and well-being of adolescents in contexts like South Africa (Agwu & Fairlie 2013).  With the advent of antiretroviral treatment (ART) access, HIV is managed as a chronic disease and elements such as self-management become an important component of care (Modi et al. 2012).  Research to date has not focused on adolescent HIV self-management. 

Purpose: The research objective was to explore the realisation of adolescent HIV self-management from the perspectives of adolescents, caregivers and healthcare workers in a South African context.

Methods: A qualitative interpretive phenomenological design was utilised in order to obtain a contextually sensitive understanding of adolescent HIV self-management.  Adolescents aged 13 to 18 who attended ART clinics, their caregivers and health workers experienced in adolescent HIV care were the target population groups.  Eighteen individual interviews and five adolescent focus groups were conducted between July and December 2015 in two facilities in the Cape Town Metropole.  Interviews were conducted in Afrikaans, English or Xhosa by trained interviewers.

Results: The researcher interpreted positive self-management behaviours as remembering to take their own treatment, coming to the clinic on their own, reporting symptoms to healthcare providers and asking questions about HIV, considering various factors when deciding to disclose their status, and finding meaning e.g. through religion, joining adolescent groups and sharing experiences. Negative self-management behaviour included deliberately deciding not to take their treatment. Reasons for this included avoidance of side-effects when going out at night to parties, not believing that they are really HIV positive, low mood, feeling nauseated by the tablets and being tired of taking treatment. Very few adolescents seemed to be aware of their viral load or CD4 count as a measure of their health, yet some used a suppressed viral load as justification for not using condoms when having sexual intercourse.  Although almost all the adolescents were coming to the clinic on their own, many adolescents claimed parental or family support with taking treatment. Pervasive stigma in communities and schools resulted in limited support structures, which were mainly restricted to their immediate family. 

Conclusion: HIV self-management in adolescents is a complex phenomenon. Adolescents mostly make decisions around taking treatment, attending clinic appointments, reporting symptoms to healthcare workers and to whom to disclose their status.