Profiles of family needs of children and youth with cerebral palsy
Version of Record online: 31 OCT 2011
© 2011 Blackwell Publishing Ltd
Child: Care, Health and Development
Volume 38, Issue 6, pages 798–806, November 2012
How to Cite
Almasri, N., Palisano, R. J., Dunst, C., Chiarello, L. A., O'Neil, M. E. and Polansky, M. (2012), Profiles of family needs of children and youth with cerebral palsy. Child: Care, Health and Development, 38: 798–806. doi: 10.1111/j.1365-2214.2011.01331.x
- Issue online: 9 OCT 2012
- Version of Record online: 31 OCT 2011
- Accepted for publication 5 September 2011
- cerebral palsy;
- family-centred care;
- K-means cluster analysis;
- profiles of family needs
Background To identify profiles of family needs of families of children and youth with cerebral palsy (CP), and determine whether profile membership is related to child, family and service characteristics.
Methods Participants were mostly mothers (80%) of 579 children and youth with CP. A family member completed modified version of the Family Needs Survey and questionnaires about their child, family and services. Research assistants determined the Gross Motor Function Classification System levels. K-means cluster analysis identified profiles of needs. Cluster membership was analysed to examine differences in clusters based on selected characteristics.
Results Four profiles of needs were identified: Low needs, Needs related to community and financial resources, Needs related to child health condition and High needs. Profile membership was differentiated based on child/youth gross motor function, adaptive behaviour, family relationships, family income, access and effort to co-ordinate services.
Conclusion Despite heterogeneity among individuals with CP and their families, four profiles of family needs were identified. In total, 51% of families had low needs suggesting that they are effectively managing their children's health conditions while 11% of families had high needs that may require high levels of services and supports. Service providers are encouraged to partner with families, provide anticipatory guidance and co-ordinate services.