Transition of chronically ill youth to adult health care: experience of youth with hemoglobinopathy

Introduction: The purpose of this study was to describe the transition experience, expectations, and concerns of chronically ill youth with hemoglobinopathy (CIYH) (e.g., sickle cell disease) who have transitioned to adult health care.

Method: A descriptive phenomenological study was used to explore the transition experience of CIYH through interviews. A purposive sample of 14 CIYH aged 19 to 25 years were recruited from a large southwestern medical center. The Colaizzi method was used to analyze the CIYH's meaning of the transition experience.

Results: Themes identified were: Reactions to adult care transition ("I don't want to go"), concerns about transition experience ("What's going to happen to me?"), pushed into transitioning to adult care ("Facing the music"), and transitioned to adult care ("Accepting that I had to leave").

Discussion: The findings revealed CIYH's adjustment process, which may facilitate the design of effective interventions to provide uninterrupted medical care as the CIYH transitions to adult health care.