Transition to adult services experienced by young people with cerebral palsy: a cross-sectional study
Aim: To assess if young people with cerebral palsy experience and health professionals provide practices that may improve transition from child to adult health services.
Method: Seventy-five young people (31 females, 44 males; mean age 18 years 5 months [standard deviation 2 years 2 months]) and/or parents and 108 health professionals completed a questionnaire describing their experience or the provision of nine transition practices.
Results: The percentage of young people reporting each practice was: appropriate parent involvement (90%); promotion of health self-efficacy (37%); named worker who supports the transition process (36%); self-management support for physical health (36%); self-management support for mental health (17%); information about the transition process (24%); meeting the adult team (16%); and life skills training (16%). Post-discharge, 10% of young people reported that their general practitioner (GP) received a discharge letter. The percentage of health professionals reporting each practice was: promotion of health self-efficacy (73.2%); self-management support (73.2%); information (69%); consulting the parent and young person about parent involvement (63% and 66%); discharge letter to a GP (55%); life skills training (36%); named worker (35%); meeting the adult team (30%); and senior manager (20%).
Interpretation: Many young people did not experience practices that may improve the experience and outcomes of transition. Young people should be involved in the development and delivery of transition to ensure it meets their needs.
What this paper adds: Many young people with cerebral palsy (CP) do not receive support that may improve the experience of transition. Appropriate protocols and training for health professionals may improve the provision of transition and reduce inconsistency in care between and within organizations. Young people and their families should be involved in service design, delivery, and evaluation related to the transition to ensure it meets their needs.
Funding
Improving transition from children’s to adults' services for young people with cerebral palsy living in Ireland. | Funder: Health Research Board / HRB | Grant ID: APA-2019-004
Improving transition from children’s to adults' services for young people with cerebral palsy living in Ireland. | Funder: Central Remedial Clinic | Grant ID: APA-2019-004
Open access funding provided by IReL.
History
Data Availability Statement
The data that support the findings of this study are openly available in Zenodo at http://doi.org/10.5281/zenodo.6636481Comments
The original article is available at https://onlinelibrary.wiley.com/Published Citation
Ryan JM, et al. Transition to adult services experienced by young people with cerebral palsy: a cross-sectional study. Dev Med Child Neurol. 2022;65(2):285-293.Publication Date
21 June 2022External DOI
PubMed ID
35729753Department/Unit
- Public Health and Epidemiology
- School of Population Health
Research Area
- Population Health and Health Services
Publisher
WileyVersion
- Published Version (Version of Record)