Beyond “purposeful and planned”: varied trajectories of healthcare transition from pediatric to adult-oriented care among youth living with HIV

ABSTRACT

Healthcare transition (HCT) from pediatric to adult-oriented healthcare is ideally conceptualized as a planned, continuous process characterized by communication between multiple stakeholders. However, empirical data is lacking regarding processes through which youth living with HIV (YLHIV) are actually transitioned to adult care. We conducted a qualitative study to gain a more comprehensive understanding of both pediatric and adult provider perspectives on the HCT process for YLHIV. Our study included focus groups discussions with 24 (11 pediatric and 13 adult) providers at a comprehensive HIV care center in the Southeastern United States. Providers described YLHIV and their HCT trajectories as diverse and complex. They described three distinct HCT trajectories: the Ideal Transition, the Abrupt Transition, and the De Facto Transition. Providers agreed that the most important determinant of successful engagement in adult-oriented care (post-HCT) appeared to be consistent prior engagement while in pediatric care (pre-HCT). In summary, risk for disengagement is not uniform among YLHIV transitioning to adult care, and HCT does not always occur in a seamless or linear fashion. Our data suggest that interventions aiming to improve HCT should be more tailored, focusing intensified efforts on those YLHIV with difficulty maintaining consistent engagement in pediatric care.

KEYWORDS:

• HIV
• transition
• adolescent

Acknowledgements

We would like to thank the staff and patients of the Grady Infectious Disease Program clinic for their enthusiastic and thoughtful participation in this study. We would also like to thank Ms. Audrey Dixon and Exceptional TBS Transcription services for their excellent work. This work was supported by the Emory Medical Care Foundation, the Emory Center for AIDS Research under NIH/NIAID Grant P30 AI050409, and the Robert Wood Johnson Foundation under Grant 73309.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by the Emory Medical Care Foundation, the Center for AIDS Research – Emory University under NIH/National Institute of Allergy and Infectious Diseases [grant number P30 AI050409], and the Robert Wood Johnson Foundation under [grant number 73309].