ArticleHealth care transitions2024
"We do it all": A qualitative exploration of the caregiver role for young adults with cerebral palsy.
Article in Health care transitions, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
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Who cites it
4 citing papers in PubMed.
- Disability-inclusive reproductive healthcare: A reproductive health education intervention for caregivers of girls with cerebral palsy in India.Public health in practice (Oxford, England) · 2026Article
- "We Don't Know What to Do With an Adult" A Qualitative Study of Cerebral Palsy Transition Gaps.Archives of physical medicine and rehabilitation · 2026Article
- Evolving rehabilitation needs across the lifespan: a mixed methods study with adults with cerebral palsy.Disability and rehabilitation · 2026Article
- Rehabilitation needs and healthcare utilization of adults with cerebral palsy: A mixed methods study.Journal of pediatric rehabilitation medicine · 2025Article
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
Aim: To describe the complex roles of and crucial support provided by caregivers to young adults with cerebral palsy (CP) during the transition to adulthood. Method: This was a qualitative study. We conducted 20 semi-structured interviews (13 caregiver; 7 patient/caregiver dyad) and analyzed data using a qualitative descriptive approach informed by phenomenological principles. Results: We identified four major themes related to the roles that caregivers play during the transition to adulthood for young adults with CP: 1) caregivers as care coordinators; 2) navigating logistic and insurance barriers; 3) adjusting to adulthood and planning for an uncertain future; and 4) supporting maintenance of health, function, and quality of life. Overall, caregivers shared the many different ways that they act as advocates for young adults with CP. Many participants identified the extensive amount of time, energy, and financial resources required to appropriately provide care. Conclusions: The transition to adulthood for young adults with CP is a challenging, uncertain, complex process for both adults with CP and their caregivers. Throughout this transition, caregivers also prioritize the happiness and quality of life of their adult children with CP. Our findings could be used by clinicians and researchers to develop and study patient- and family-centered transition processes for individuals with CP that attend to the struggles and priorities of youth with CP and caregivers alike.
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Registered trials
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