We never thought this would happen: transitioning care of adolescents with perinatally acquired HIV infection from pediatrics to internal medicine

Abstract

Purpose. Transitioning the medical care of children with perinatally acquired HIV from pediatric care to internal medicine practices has become increasingly important as newer therapies prolong survival. The study aims to describe challenges to caring for these adolescents and the potential barriers to transitioning them to internal medicine-based care. Methods. Qualitative study in which data were gathered from open-ended interviews conducted from November 2005 to April 2006 with 18 adolescents with HIV, 15 of their parents, and 9 pediatric health care providers from the Yale Pediatric AIDS Care Program, New Haven, Connecticut. Results. Issues of stigma played a prominent role in both the challenges to care and barriers to transitioning care. Challenges to care were: (1) poor adherence to medication regimens; (2) adolescent sexuality; and (3) disorganized social environments. Potential barriers to transitioning care were: (1) families’ negative perceptions of and experiences with stigma of HIV disease – which undermined the desire to meet new providers; (2) perceived and actual lack of autonomy – pediatric providers feared that staff in adult clinics would demand a level of independence that adolescents did not have; and (3) difficulty letting go of relationships – adolescents, guardians, and providers described a familial relationship and expressed anxiety about terminating their relationships. Conclusion. Understanding these challenges and barriers can inform both pediatric and adult HIV care providers and enable them to create successful transition programs, with the goal of improving retention and follow-up to care.

Keywords:

• transition
• adolescents
• special health care needs
• HIV/AIDS

Acknowledgements

We would like to thank Nancy Kim, MD, and Nora Groce, PhD for their thoughtful comments, and Anne Murphy and Leslie Hurst for their referrals of patients. We are grateful to the adolescents and their families who shared their experiences with us. Supported by the Doris Duke Clinical Research Fellowship. Supported in part by a grant from the NIH (T32-AI07210-23).

Notes

1. The three independent coders were a Doris Duke Clinical Research Fellow, a pediatric infectious disease fellow and the medical director of the adult HIV clinic (TV, ALB, KW). The remaining two researchers (SR and WAA) were a nurse practioner and attending physician at the Pediatric AIDS Care Clinic, respectively.