Transition of chronically-ill youth to adult care: Experience of youth with hemoglobinopathy




Bryant, Rosalind

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With the advent of innovative technologies and medical advances, over half million chronically ill youth (CIY) cross the threshold into adulthood yearly. Successful transition of the CIY from pediatrics to adult care continues to be an inconsistent process, especially for CIY with hemoglobinopathy (e.g. sickle cell disease, thalassemia). The transitioning experience to adult care may be interrupted by obstacles such as lack of transition support, limited number of transition programs and resistance toward transfer to adult health care. Since CIY with hemoglobinopathy have a risk of developing severe medical complications (e.g. sepsis, severe anemia), the transitional experience including obstacles must be understood in order to promote an uninterrupted transfer to adult health care.

The purpose of this study was to describe the transition experience, expectations and concerns of the CIY with hemoglobinopathy regarding their transfer to adult health care. The research questions addressed were: (1) What are the experiences of the CIY with hemoglobinopathy who transition from pediatric to adult health care? (2) What are the expectations and concerns of CIY with hemoglobinopathy regarding their transition experience?

A Husserlian descriptive phenomenological methodology was used to uncover the essential structures of the CIY's transition experience. The study recruited a purposive sample of 14 CIY with hemoglobinopathy from a large medical center's transitional clinic. CIY ranged in age from 18 to 25 years. Colaizzi's method was used to analyze meaning of transition experience. Four themes were identified from the interviews of CIY with hemoglobinopathy which were: Reaction to the transition experience, concerns about the transition experience, getting pushed into transitioning to adult care, and acknowledgement of the transition to adult care. An adjustment process was discovered through the interview meanings and formulated 4 themes that may help to facilitate designing effective interventions to provide uninterrupted medical care as the CIY with hemoglobinopathy transition from pediatric to adult health care.



Health and environmental sciences, Chronically ill, Hemoglobinopathy, Young adults