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Exploring the transition experiences of young adults with cerebral palsy
Isabelle Clough1, Evelyn Culnane1,2, Hayley Loftus2
1Melbourne School of Population and Global Health, The University of Melbourne, Carlton, Victoria, Australia.
Insights
Young adults with cerebral palsy need better preparation and support for transitioning from pediatric to adult healthcare. Improved coordination and adult services are key for a positive healthcare experience during this critical period.
Area of Science:
- Healthcare transition research
- Developmental disabilities
- Pediatric to adult healthcare services
Background:
- Effective healthcare transition is crucial for young adults with chronic conditions like cerebral palsy.
- Understanding their experiences optimizes care transfer from pediatric to adult settings.
- This study explores healthcare experiences during and after transition to adult services.
Purpose of the Study:
- To investigate the healthcare experiences of young adults with cerebral palsy during their transition from pediatric to adult healthcare services.
- To identify factors enabling a positive healthcare experience in the adult setting.
- To inform strategies for improved healthcare transition support.
Main Methods:
- Purposive sampling of eleven young adults with cerebral palsy.
- Conducted ten one-on-one telephone interviews and one written response.
- Utilized thematic analysis of transcribed interviews to describe transition experiences.
Main Results:
- Key themes identified: preparedness of young adults and parents, coordination of transfer and continuity of care, and adjustment to adult services.
- Subthemes included expectations of adult care, self-management skill development, differences between pediatric and adult services, service accessibility, and autonomy.
- Experiences were shaped by preparation, transfer coordination, and adult service capacity.
Conclusions:
- Dedicated transition support is vital for a well-coordinated transfer from pediatric to adult healthcare.
- Young adults' experiences in adult care depend on their transition journey and the adult services' ability to meet their needs.
- Optimizing healthcare transition requires a focus on preparation, coordination, and adult service adaptation.
Background:
It is important that young adults with a chronic health condition or developmental disability, such as cerebral palsy, receive adequate healthcare transition preparation and support to optimise the transition period and transfer from paediatric to adult health services. Understanding the healthcare experiences of young adults during and after the transition period will provide valuable insights into what enables a positive healthcare experience for young adults in the adult health setting.
Methods:
Eleven young adults with cerebral palsy who had their last appointment at the Royal Children's Hospital between 2016 and 2018 were purposively recruited for this study. Ten participants completed one-on-one telephone interviews, and one participant provided written responses to interview questions. Five participated via parent proxy. Interviews were recorded, transcribed verbatim, and analysed using the Braun and Clarke six-step thematic analysis to create an interpretive description of participants' transition experiences.
Results:
Three themes were generated: (1) "preparedness of the young adult and parent," which discussed the preparation for adult healthcare, with subthemes (a) expectations of adult care and (b) development of self-management skills during transition; (2) "coordination of transfer process and continuity of care," which illustrated the impact of transfer coordination on continuity of care; and (3) "adjusting to adult services," which highlighted experiences of care in the adult setting, with subthemes (a) differences between paediatric and adult services, (b) availability and accessibility of adult and community services to meet needs, and (c) autonomy and agency.
Conclusion:
Dedicated transition support for young adults and their parents during transition from paediatric to adult healthcare plays an important role in ensuring a supportive and well-coordinated transition and transfer of care. Experience of care in the adult setting is influenced by a combination of both transition experience and the capacity of adult services to cater for young adults' needs.
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