Service use and family-centred care in young people with severe cerebral palsy: a population-based, cross-sectional clinical survey

Disability and Rehabilitation
B C McDowellJ Parkes

Abstract

To assess healthcare use and family perception of family-centred care in children and young adults with severe cerebral palsy (CP) within a geographical region of the UK. Young people (4-27years) with severe forms of CP; Gross Motor Function Classification System levels IV and V, were recruited via an established case register. Data were collected in the participant's home using a standardised background proforma and validated questionnaires. The Measure of Processes of Care was used to assess the family's perception of family-centred care. One-hundred and twenty-three children, young people and their families/guardians participated. Results showed high accessing of specialist services in childhood with a considerable decrease in young adults. Use of generalist services remained relatively constant. The reported use of formal respite services and support groups/youth clubs was relatively poor. Family-centred care was poor in the area of "providing general information" (2.8 ± 1.73) but more moderate in the areas of "providing specific information about the young person" (4.2 ± 1.94), "enabling and partnership" (4.2 ± 1.9), "co-ordinated and comprehensive care" (4.3 ± 1.95) and "respectful and supportive care" (4.7 ± 1.75). The a...Continue Reading

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Citations

Nov 21, 2019·Scandinavian Journal of Caring Sciences·Gamze Yilmaz
Jul 2, 2019·Disability and Rehabilitation·Dikmen BezmezSibel Yardimci
Aug 4, 2020·Acta Paediatrica·Peony Shih Pui TanSean E Kennedy
Mar 27, 2021·Developmental Medicine and Child Neurology·Brad G KurowskiAlexis Mitelpunkt
Jun 1, 2021·Frontiers in Neurology·Jennifer M RyanMarika Noorkoiv
Oct 28, 2021·Developmental Medicine and Child Neurology·Manjula ManikandanJennifer M Ryan

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