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Lookup NU author(s): Dr Jane GoodwinORCiD
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© 2025 The Author(s). Journal of Evaluation in Clinical Practice published by John Wiley & Sons Ltd.Objectives: At Evelina London Children's Hospital, tertiary care is provided for children with Cerebral Palsy (CP) across the South East of England. An increasing number of adults with CP remain under the care of the children's hospital due to a lack of appropriate adult neurodisability services. This quality improvement project as part of a gap analysis regarding transition pathways for young adults with CP, aimed to explore the lived experience of young adults within our service, with respect to transition and care in adulthood. Methods: This was a multi-methods design. Firstly, a bespoke questionnaire to young adults with CP and their families evaluated their experience of transition, access to services, challenges with care, and their needs from healthcare professionals (n = 46). Then, a focus group with parents of adults with CP (n = 4) and interviews with adults with CP (n = 5) informed design of an ideal transition pathway and adult service. The qualitative data were thematically analysed. Results: Framework analysis of the questionnaire data was mapped against the International Classification of Functioning (ICF) with the following themes identified: Body structure and function: pain and anxiety; Activity: equality; accessibility and relationships; Participation: need for friendship and social opportunities, employment and education; Environmental factors: health services and providers; home environment and wider community; Personal factors: independence. Analysis of the focus group and interviews identified five main themes: Gradual and co-ordinated transition process; Co-ordination of care in adult services; Knowledge, skills and experience of professionals; Communication; and Worrying about the future. Conclusions: Participants identified significant challenges with transition pathways and adult care. Annual reviews from healthcare professionals with expertise in CP should be offered to young adults to ensure early identification of health needs. Further research is needed to support business planning in development of appropriate adult services for adults with CP and ensure successful transition pathways.
Author(s): Turner S, Nash C, Goodwin J, Smith J, Fairhurst C, Cadwgan J
Publication type: Article
Publication status: Published
Journal: Journal of Evaluation in Clinical Practice
Year: 2025
Volume: 31
Issue: 1
Print publication date: 28/02/2025
Online publication date: 28/02/2025
Acceptance date: 14/01/2025
Date deposited: 10/03/2025
ISSN (print): 1356-1294
ISSN (electronic): 1365-2753
Publisher: John Wiley and Sons Inc
URL: https://doi.org/10.1111/jep.70011
DOI: 10.1111/jep.70011
Data Access Statement: The data that support the findings of this study are kept on NHS confidential server. The authors can be contacted if further information is required. Relevant data is available upon reasonable request
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