Development of a condition-specific measure of quality of life for children with cerebral palsy: empirical thematic data reported by parents and children

Waters, Elizabeth, Davis, Elise, Salmon, L., Reddihough, Dinah and Boyd, Roslyn 2005, Development of a condition-specific measure of quality of life for children with cerebral palsy: empirical thematic data reported by parents and children, Child care health and development, vol. 31, no. 2, pp. 127-135.

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Title Development of a condition-specific measure of quality of life for children with cerebral palsy: empirical thematic data reported by parents and children
Author(s) Waters, Elizabeth
Davis, Elise
Salmon, L.
Reddihough, Dinah
Boyd, Roslyn
Journal name Child care health and development
Volume number 31
Issue number 2
Start page 127
End page 135
Publisher Blackwell Scientific Publications
Place of publication Oxford, England
Publication date 2005
ISSN 0305-1862
1365-2214
Keyword(s) Quality of life
Cerebral palsy
Health-related
Measurement
Families
Summary Background: Although there is increasing recognition that quality of life (QOL) and health-related quality of life (HRQOL) are important outcome variables in clinical trials for children with cerebral palsy, there are substantial limitations in existing measures of QOL. This study identify themes of QOL for children with cerebral palsy and their parents to guide the development of a new condition-specific QOL scale. Methods: A qualitative study of parent and child views on QOL composition was conducted, using a grounded theory framework. Families participated in semistructured interviews on QOL until thematic saturation was reached (n = 28 families). Results: Overall, 13 themes emerged from the interviews: physical health, body pain and discomfort, daily living tasks, participation in regular physical and social activities, emotional well-being and self-esteem, interaction with the community, communication, family health, supportive physical environment, future QOL, provision of, and access to services, financial stability, and social well-being. Conclusions: Research with parents and children with cerebral palsy, representative of severity across the disease spectrum and socio-economic status, reinforced and expanded on the traditional themes that have underpinned QOL measurement development. This has implications not only for the development of a new QOL scale for children with cerebral palsy, but also for clinical interventions and community care management.
Language eng
Field of Research 111712 Health Promotion
HERDC Research category C1 Refereed article in a scholarly journal
Copyright notice ©2005, Blackwell Publishing Ltd
Persistent URL http://hdl.handle.net/10536/DRO/DU:30003349

Document type: Journal Article
Collection: School of Health and Social Development
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