PURPOSE: To describe and define the experiences of adults with cerebral palsy (CP) and parents of adults with CP who have been involved in a transfer of physiatry care from pediatric to adult healthcare and to explore their experiences more generally in the transition from pediatric to adult services. METHODS: A qualitative research approach was used. Semi-structured focus group interviews were conducted with adults with CP (n = 5) and parents of adults with CP (n = 8) to explore the health care transition (HCT) process from pediatric to adult healthcare. Four key content domains were used to facilitate the focus groups; 1) Transition Planning, 2) Accessibility of Services, 3) Experience with Adult Providers, and 4) Recommendations for Improving the Transition Process. Conventional content analysis was used to analyze the data. RESULTS: Four themes emerged from the focus groups; Lost in Transition, Roadmap to Care, List of None, and One Stop Shopping. Participants felt lost in the HCT process, requested a transparent transition plan, expressed concern regarding access to adult healthcare, and made recommendations for improvements. CONCLUSION: Challenges in transitioning from pediatric to adult health care were identified by all participants and several strategies were recommended for improvement.

Transition from pediatric to adult medical care and the significant psychosocial considerations impacting this developmental process are a primary focus in health care today. Social workers are often the informal brokers of this complex and nuanced process and are uniquely trained to complete biopsychosocial assessments to understand the needs of patients and families and address psychosocial factors. Their extensive knowledge of resources and systems, along with their sophisticated understanding of the relationship issues, family dynamics, cultural implications, and basic person-in-context approach allow for unique collaboration with the health care team, family, and community supports to develop successful transition plans and programs.

CC is a cornerstone of HSW service provision in pediatric health care settings. HSWs can be vital collaborators in developing innovative transdisciplinary CC models.

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