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Experiences of Health Services for Adults with Cerebral Palsy, Their Support People, and Service Providers

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Date 2024 Jul 20
PMID 39032015
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Abstract

Aim: To explore the experiences of health services among adults with cerebral palsy (CP) in Ireland, from the perspectives of adults with CP, their support people, and service providers.

Method: A qualitative descriptive study design was used. In-depth semi-structured interviews were conducted between March and August 2021 with adults with CP, people who supported them, and health professionals. Thematic analysis was used to evaluate the data.

Results: Twenty-one adults with CP, seven support people (family carer[s], spouse or partner, or friend), and 15 service providers participated in the study. Adults had a mean age of 38 years 5 months (range 22-58 years) and were classified in Gross Motor Function Classification System levels I to V. Five themes were identified from the data: (1) access challenges in adult services; (2) knowledge and understanding of CP; (3) support people's role and care burden; (4) communication and interaction in adult services; and (5) health system challenges.

Conclusion: Adults with CP in Ireland face multiple challenges accessing the health services they need. Services were reported to be inadequate, with limited resources and understanding of CP. Participants highlighted a need for system-level interventions, including enhanced training for health professionals to effectively meet the needs of adults with CP.

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References
1.
Kolehmainen N, McCafferty S, Maniatopoulos G, Vale L, Le-Couteur A, Colver A . What constitutes successful commissioning of transition from children's to adults' services for young people with long-term conditions and what are the challenges? An interview study. BMJ Paediatr Open. 2017; 1:e000085. PMC: 5673067. DOI: 10.1136/bmjpo-2017-000085. View

2.
Ryan J, Allen E, Gormley J, Hurvitz E, Peterson M . The risk, burden, and management of non-communicable diseases in cerebral palsy: a scoping review. Dev Med Child Neurol. 2018; 60(8):753-764. DOI: 10.1111/dmcn.13737. View

3.
Hanes J, Hlyva O, Rosenbaum P, Freeman M, Nguyen T, Palisano R . Beyond stereotypes of cerebral palsy: Exploring the lived experiences of young Canadians. Child Care Health Dev. 2019; 45(5):613-622. PMC: 6851573. DOI: 10.1111/cch.12705. View

4.
van Gorp M, Hilberink S, Noten S, Benner J, Stam H, van der Slot W . Epidemiology of Cerebral Palsy in Adulthood: A Systematic Review and Meta-analysis of the Most Frequently Studied Outcomes. Arch Phys Med Rehabil. 2020; 101(6):1041-1052. DOI: 10.1016/j.apmr.2020.01.009. View

5.
Pope C, Ziebland S, Mays N . Qualitative research in health care. Analysing qualitative data. BMJ. 2000; 320(7227):114-6. PMC: 1117368. DOI: 10.1136/bmj.320.7227.114. View