Challenges and fears of adolescents and young adults living with HIV facing transition to adult HIV care

Abstract

Adolescents and young adults living with perinatally-acquired HIV (AYLPHIV) have poor outcomes along each step of the HIV care continuum due to challenges in seeking care and advocating for themselves. The transition from paediatric to adult HIV care is a particularly high-risk period for AYLPHIV in rural Uganda. We conducted in-depth interviews with AYLPHIV (n=30), caregivers (n=10), and healthcare providers (n=10) to understand challenges facing AYLPHIV during the transition from paediatric to adult HIV care. Themes were identified by thematic content analysis. Transition-related challenges and fears included difficulty navigating the adult HIV clinic; loss of informational support; long wait times at the adult HIV clinic; lack of privacy, and fear of HIV status disclosure and stigma; and loss of support from caregivers, and health care providers. Before transitioning to adult HIV care, AYLPHIV should be adequately prepared and given appropriate information to help them navigate adult HIV care.