Results:

Analysis of the adolescent interview content revealed three categories of patient needs: change of relationships, knowledge and information, and daily living. Analysis of the parental interviews identified two categories of needs: change of relationships and daily living. Change of relationships had similar meaning in both patient and parental groups; the provider and clinic had been a consistent part of their lives since the child’s birth, and that was about to change. Concerns about the quality and compassion of the new provider mix with feeling of loss of the pediatric-provider relationship. This study nicely elucidated the different perspectives on transition and its effects on daily living. For the patients, it meant more responsibility for managing their condition and communicating with the medical provider. For the parents, the impact was of “letting go” of their child, feeling less needed, and worrying about the safety and security of their child. Both patients and parents expressed concern about the continuity of care after transition. Both groups expressed the importance of meeting the new provider and team, seeing the new facility, and receiving assurance of the adult provider’s familiarity with the patient’s history.