Perceptions of solid organ transplant recipients regarding self-care management and transitioning

Negative outcomes are consistently reported when adolescent solid organ transplant recipients are transitioned to adult transplant programs. The purpose of this quality improvement project was to understand the perceptions of patients and their parents about self-care management at transition. Solid organ transplant recipients, 16 to 22 years of age (n = 10), in a 396-bed pediatric hospital in the northeastern United States and their parents (n = 10) completed semi-structured interviews regarding health, transplant history, and participants' thoughts and feelings related to transitioning to adult transplant centers. Qualitative data were analyzed using the phenomenological method with NVIVO software to identify themes across interviews. Themes included negative perceptions of adult transplant centers due to anxiety regarding the competencies of new providers in caring for the child's medical needs, unfamiliarity with adult medical providers, fear of letting go and assuming greater responsibility, and discrepancies between providers, parents, and patients. Clinical implications are discussed, including the creation of a pediatric transition clinic and strategies for providers to promote self-care management among patients.