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Child Care Health Dev. 2012 Nov;38(6):798-806. doi: 10.1111/j.1365-2214.2011.01331.x. Epub 2011 Oct 31.

Profiles of family needs of children and youth with cerebral palsy.

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1
Physical Therapy Department, Rehabilitation Sciences Faculty, University of Jordan, Amman, Jordan. nihadaa@gmail.com

Abstract

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.

[Indexed for MEDLINE]

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