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Transition from child to adult health services for young people with cerebral palsy in Ireland; implications from a
Jennifer M Ryan1, Meriel Norris2, Aisling Walsh3
1CP-Life Research Centre, School of Physiotherapy, RCSI University of Medicine and Health Sciences, Dublin, Ireland.
Insights
Young people with cerebral palsy in Ireland experience poor healthcare transitions due to a lack of coordinated support and information. Improving transition pathways is crucial for better adult health outcomes.
Area of Science:
- Healthcare transition research
- Pediatric to adult healthcare services
- Cerebral palsy management
Background:
- Transition from pediatric to adult healthcare is critical for young people with cerebral palsy.
- Poor transition processes can lead to negative health outcomes and dissatisfaction.
- This study examines transition provision and experiences in Ireland.
Purpose of the Study:
- To evaluate the provision and experience of healthcare transition for young people with cerebral palsy in Ireland.
- To identify gaps and challenges in current transition practices.
- To develop recommendations for improving transition services.
Main Methods:
- Convergent parallel mixed-methods study design.
- Data collected via surveys and semi-structured interviews with young people (16-22 years), parents, and health professionals.
- Integration of quantitative and qualitative data using joint displays.
Main Results:
- Identified deficiencies include lack of a named transition worker, limited information, insufficient self-management support, and no opportunity to meet adult healthcare teams.
- Quantitative data indicated limited promotion of health self-efficacy and a lack of managerial responsibility for transition.
- Dissonance noted regarding the appropriate level of parental involvement.
Conclusions:
- A standardized transition pathway is essential for young people with cerebral palsy.
- Collaborative approaches are needed to support role adaptation for young people and parents.
- Enhanced involvement of general practitioners and clear communication among all stakeholders are vital.
Background:
Poor transition from child- to adult-oriented healthcare may lead to negative outcomes and dissatisfaction with services in adulthood. The aim of the study was to examine how transition is provided to and experienced by young people with cerebral palsy in Ireland. This report provides integrated quantitative and qualitative findings and implications based on the totality of knowledge generated.
Methods:
A convergent parallel mixed-methods study was conducted. Data were collected from people with cerebral palsy aged 16-22 years, parents, and health professionals using surveys and semi-structured interviews, which were both informed by a framework of nine key transition practices. Quantitative finding from the surveys and qualitative findings from interviews were integrated at the interpretation stage of the research using integration through joint displays. Implications were developed through discussions with health professionals, young people, and parents.
Results:
Surveys were completed by 75 young people/parents and 108 health professionals. Interviews were conducted with 13 young people, 14 parents, and 27 health professionals. There was complementarity between quantitative and qualitative findings indicating lack of a named worker, limited information provision, insufficient self-management support, no opportunity to meet the adult team, limited contact with the general practitioner, and no opportunity for attending formal life skills training. There was dissonance between quantitative and qualitative findings regarding appropriate level of parental involvement. Quantitative findings identified limited promotion of health self-efficacy and a lack of senior managers responsible for transition. These practices were not described in the qualitative findings.
Conclusion:
Implications of integrated findings include the need for a standardised transition pathway, intentional actions to enable parents and young people to adapt to changing roles, provision of information in a collaborative and phased approach, a common understanding of self-management between young people, parents and health professionals, and the need to involve general practitioners in transition.
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