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

Abstract

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.

The Outcomes of Transition from Pediatrics to Adult Care among Adolescents and Young Adults with HIV at a Tertiary Care Center in Bangkok

“…3 One US-based qualitative studies identified that AYHIV who prepared for readiness in transition program as a key factor in successful of transition, however, we did not find that AYHIV who participated in Happy Teen Program had a better outcome. 16 Our study suggests that virologically suppressed adolescents are likely to remain suppressed after transition to adult care, while those with virologic failure at the pediatric clinic were unlikely to suppress after transition. In contrast, we did find a small number of AYHIV developed virologic failure after transition despite a history of remaining suppressed in pediatric clinic.…”

“…3 One US-based qualitative studies identified that AYHIV who prepared for readiness in transition program as a key factor in successful of transition, however, we did not find that AYHIV who participated in Happy Teen Program had a better outcome. 16…”

A qualitative analysis examining intersectional stigma among young adults living with HIV in Atlanta, Georgia

“…This analysis is derived from a mixed-methods prospective, observational cohort study evaluating healthcare transition among youth at a large HIV care center in Atlanta, Georgia, US [21][22][23]. Between August 2016 and June 2018, 70 participants were recruited from the pediatric clinic within 3 months prior to anticipated healthcare transition to adult care.…”