A qualitative analysis of self-management needs of adolescents and young adults living with perinatally acquired HIV in rural, southwestern Uganda

Abstract

The number of adolescents living with HIV remains high in sub-Saharan Africa with poorer HIV treatment outcomes among adolescents and young adults compared to individuals in other age groups. For adolescents and young adults living with perinatally acquired HIV (AYLPHIV), the transition from pediatric to adult HIV care is a particularly high-risk period. We conducted a qualitative study to understand self-management needs of AYLPHIV in rural, southwestern Uganda as they prepare to transition to adult HIV care in order to inform relevant interventions that can enable AYLPHIV acquire the necessary skills to manage their illness as they age into adulthood. We conducted 60 in-depth interviews with AYLPHIV (n = 30), caregivers (n = 20) and health care providers (n = 10) from the HIV clinic at Mbarara Regional Referral Hospital. We used an interview guide that focused on perceptions about transition to adult HIV care, challenges with transitioning, navigating HIV care, and self-management needs for AYLPHIV (from the perspectives of AYLPHIV, their caregivers, and health care providers). We used thematic analysis to identify themes related to AYLPHIV's self-management skills. We identified several self-management needs that we grouped under two major themes; social support and empowerment for AYLPHIV to assume responsibility for their own health and to navigate adult HIV care independently. The sub-themes under social support were information support, instrumental support, and emotional support as the sub themes while sub-themes under empowerment included self-advocacy skills, interpersonal skills, self-care skills, and disclosure skills. Taken together, these findings indicate that AYLPHIV need to be supported and empowered to maximize their chances of successfully transitioning to adult HIV care. Support comes from peers and caregivers. AYLPHIV require knowledge about their HIV status and empowerment with different skills including: self-advocacy skills, interpersonal skills, self-care skills, and HIV status disclosure skills, in order to assume responsibilities related to independent HIV care.

Fig 1. The social support and empowerment model.