Examining healthcare transition experiences among youth living with HIV in Atlanta, Georgia, USA: a longitudinal qualitative study

INTRODUCTION: Virtually all youth living with HIV in paediatric/adolescent care must eventually transition to adult‐oriented HIV care settings. To date, there is limited evidence examining the perspectives of youth living with HIV longitudinally through the healthcare transition process. The objective of our study was to examine attitudes and experiences of youth living with HIV regarding healthcare transition, including potential change in attitudes and experiences over time. METHODS: We conducted a longitudinal qualitative interview study within a large, comprehensive HIV care centre in Atlanta, Georgia, USA between August 2016 and October 2019.We interviewed 28 youth living with HIV as part of a longitudinal observational cohort study of youth undergoing healthcare transition. We conducted qualitative interviews both immediately prior to, and one year following the transition from paediatric to adult‐oriented care. RESULTS: Six distinct themes emerged from interviews conducted with youth living with HIV pre‐transition: (1) reluctance to transition; (2) paediatric spaces as welcoming, and adult spaces as unwelcoming; (3) varying levels of preparation for transition; and (4) expectation of autonomy in the adult clinic. Analysis of post‐transition interviews with the same youth demonstrated: (1) inconsistencies in the transition experience; (2) fear and anxiety about transition quelled by experience; (3) varying reactions to newfound autonomy and (4) communication as the most valuable facilitator of successful transition. CONCLUSIONS: This study’s longitudinal perspective on the healthcare transition experience yields insights that can be incorporated into programming targeting this critically important population. Although our study was conducted in a USA‐based clinic with co‐located paediatric and adult care services, many of our findings are likely to have relevance in other settings as well. Interventions aiming to improve HIV care engagement through transition should seek to enhance patient–provider communication in both paediatric and adult clinics, improve preparation of patients in paediatric clinics and ease patients gradually into autonomous disease management.