Quality of life of adolescents with cerebral palsy: perspectives of adolescents and parents

Davis, Elise, Shelly, Amy, Waters, Eelizabeth, Mackinnon, Andrew, Reddihough, Dinah, Boyd, Roslyn and Graham, H. Kerr (2009) Quality of life of adolescents with cerebral palsy: perspectives of adolescents and parents. Developmental Medicine and Child Neurology, 51 3: 193-199. doi:10.1111/j.1469-8749.2008.03194.x

Author Davis, Elise
Shelly, Amy
Waters, Eelizabeth
Mackinnon, Andrew
Reddihough, Dinah
Boyd, Roslyn
Graham, H. Kerr
Title Quality of life of adolescents with cerebral palsy: perspectives of adolescents and parents
Journal name Developmental Medicine and Child Neurology   Check publisher's open access policy
ISSN 0012-1622
Publication date 2009-01-01
Year available 2009
Sub-type Article (original research)
DOI 10.1111/j.1469-8749.2008.03194.x
Open Access Status Not Open Access
Volume 51
Issue 3
Start page 193
End page 199
Total pages 7
Editor Hilary M Hart
Peter Baxter
Place of publication U.K.
Publisher Wiley-Blackwell Publishing Ltd.
Language eng
Subject C1
920403 Disability and Functional Capacity
1114 Paediatrics and Reproductive Medicine
1117 Public Health and Health Services
Formatted abstract
BACKGROUND: Although it is expected that caring for a child with cerebral palsy (CP) can impact on the quality of life (QOL) of caregivers, the QOL of carers' has yet to be adequately examined. The aims of this study are to: (1) explore the QOL of mothers and fathers of children with CP aged 3-18 years; and (2) examine whether the impact of caring for a child with CP changes from childhood to adolescence.
METHOD: A qualitative study was conducted utilizing a grounded theory framework. Twenty-four mothers and 13 fathers of children and adolescents with CP aged 3-7 years (n = 15), 8-12 years (n = 10) and 13-18 years (n = 12) and with varying levels of impairment (GMFCS Level I = 1, II = 4, II = 3, IV = 5, V = 12) participated in semi-structured interviews about their QOL. The transcripts were analysed to identify issues affecting parental QOL.
RESULTS: There were no differences in parental QOL among subgroups (i.e. mothers and fathers, age groups, GMFCS levels). Parental QOL ranged across a wide spectrum. Caring for a child with CP affects a parent's physical well-being, social well-being, freedom and independence, family well-being and financial stability. Parents indicated that they often feel unsupported by the services they access. CONCLUSIONS: Caring for a child with CP can both positively and negatively impact on a parent's life. There is value for both parents and children if parental concerns and determinants of QOL are considered in overall programme planning and service delivery for children and their families.
Keyword Children
Cerebral palsy
Q-Index Code C1
Q-Index Status Confirmed Code

Document type: Journal Article
Sub-type: Article (original research)
Collections: Mater Health Services Publications
2010 Higher Education Research Data Collection
School of Medicine Publications
Version Filter Type
Citation counts: TR Web of Science Citation Count  Cited 34 times in Thomson Reuters Web of Science Article | Citations
Scopus Citation Count Cited 41 times in Scopus Article | Citations
Google Scholar Search Google Scholar
Created: Thu, 03 Sep 2009, 18:42:15 EST by Mr Andrew Martlew on behalf of Faculty Of Health Sciences