DiFazio Rachel L, Harris Marie, Vessey Judith A, Glader Laurie, Shanske Susan
Boston Children's Hospital, Boston, MA, USA.
Boston Children's Hospital, Boston, MA, USA Boston College, Chestnut Hill, MA, USA.
J Pediatr Rehabil Med. 2014;7(1):17-31. doi: 10.3233/PRM-140276.
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.
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.
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.
Challenges in transitioning from pediatric to adult health care were identified by all participants and several strategies were recommended for improvement.
描述和界定患有脑瘫（CP）的成年人以及患有CP的成年人的父母在从儿科物理治疗护理向成人医疗保健转移过程中的经历，并更全面地探讨他们在从儿科服务向成人服务过渡中的经历。
采用定性研究方法。对患有CP的成年人（n = 5）和患有CP的成年人的父母（n = 8）进行了半结构化焦点小组访谈，以探讨从儿科医疗保健向成人医疗保健的医疗保健过渡（HCT）过程。使用四个关键内容领域来促进焦点小组讨论；1）过渡计划，2）服务可及性，3）与成人医疗服务提供者的经历，4）改进过渡过程的建议。采用常规内容分析法对数据进行分析。
焦点小组讨论中出现了四个主题；过渡中迷失、护理路线图、无清单和一站式购物。参与者在HCT过程中感到迷失，要求有一个透明的过渡计划，对获得成人医疗保健表示担忧，并提出了改进建议。
所有参与者都指出了从儿科医疗保健向成人医疗保健过渡中的挑战，并提出了一些改进策略。
