Affiliations: Boston Children's Hospital, Boston, MA, USA | Boston College, Chestnut Hill, MA, USA | Harvard Medical School, Boston, MA, USA
Note: [] Corresponding author: Rachel L. DiFazio, Orthopedics Center,
Boston Children's Hospital. 300 Longwood Ave, Boston, MA 02114, USA. Tel.: +1
617 240 8287; Fax: +1 617 730 0092; E-mail:
Rachel.difazio@childrens.harvard.edu
Abstract: 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.
Keywords: Cerebral palsy, health care transition, physiatry
