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

Waters, E., Maher, E., Salmon, L., Reddihough, D. and Boyd, R. (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, 31 2: 127-135. doi:10.1111/j.1365-2214.2004.00476.x


Author Waters, E.
Maher, E.
Salmon, L.
Reddihough, D.
Boyd, R.
Title Development of a condition-specific measure of quality of life for children with cerebral palsy: Empirical thematic data reported by parents and children
Journal name Child: Care, Health and Development   Check publisher's open access policy
ISSN 0305-1862
1365-2214
Publication date 2005-03
Sub-type Article (original research)
DOI 10.1111/j.1365-2214.2004.00476.x
Volume 31
Issue 2
Start page 127
End page 135
Total pages 9
Place of publication Oxford, U.K.
Publisher Blackwell Publishing
Language eng
Subject 1103 Clinical Sciences
1109 Neurosciences
1114 Paediatrics and Reproductive Medicine
Formatted abstract
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.
Keyword Quality of life
Cerebral Palsy
Health-related measurement
Families
Q-Index Code C1

Document type: Journal Article
Sub-type: Article (original research)
Collections: Excellence in Research Australia (ERA) - Collection
School of Medicine Publications
 
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Created: Fri, 08 Jan 2010, 12:13:34 EST by Elissa Saffery on behalf of Faculty Of Health Sciences