title: Opportunities lost and found: experiences of patients with cerebral palsy and their parents transitioning from pediatric to adult healthcare.
abstract: OBJECTIVE
  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.
  
  
  CONCLUSIONS
  Challenges in transitioning from pediatric to adult health care were identified by all participants and several strategies were recommended for improvement.
authors.affiliation: Boston Children's Hospital, Boston, MA, USA.
authors.forename: Rachel L
authors.initials: RL
authors.lastname: DiFazio
authors.affiliation: Boston Children's Hospital, Boston, MA, USA.
authors.forename: Marie
authors.initials: M
authors.lastname: Harris
authors.affiliation: Boston Children's Hospital, Boston, MA, USA Boston College, Chestnut Hill, MA, USA.
authors.forename: Judith A
authors.initials: JA
authors.lastname: Vessey
authors.affiliation: Boston Children's Hospital, Boston, MA, USA Harvard Medical School, Boston, MA, USA.
authors.forename: Laurie
authors.initials: L
authors.lastname: Glader
authors.affiliation: Boston Children's Hospital, Boston, MA, USA.
authors.forename: Susan
authors.initials: S
authors.lastname: Shanske
mesh_terms: D000328:Adult; D000368:Aged; D002547:Cerebral Palsy / Q000534:rehabilitation*; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D010361:Patients / Q000523:psychology*; D036301:Qualitative Research; D060305:Transition to Adult Care; D055815:Young Adult
keywords: Cerebral palsy; health care transition; physiatry