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Family needs of parents of children and youth with cerebral palsy
Journal article   Peer reviewed

Family needs of parents of children and youth with cerebral palsy

R J Palisano, N Almarsi, L A Chiarello, M N Orlin, A Bagley and J Maggs
Child : care, health & development, v 36(1), pp 85-92
Jan 2010
DOI: https://doi.org/10.1111/j.1365-2214.2009.01030.x
PMID: 19961501
Featured in Collection :   UN Sustainable Development Goals @ Drexel

Abstract

Cross-Sectional Studies Humans Cerebral Palsy - physiopathology Child, Preschool Family Health Male Health Services Needs and Demand Parents - psychology Disabled Children - classification Adolescent Cerebral Palsy - rehabilitation Female Surveys and Questionnaires Child Motor Skills - classification
Understanding the needs of families of children and youth with cerebral palsy (CP) is important for family-centred services. The aims of this study were to identify: (1) differences in the number and types of family needs expressed by parents based on the age and gross motor function level of their children with CP; (2) the most frequent family needs; and (3) needs that differ on gross motor function level. A total of 501 parents (77.6% mothers) of children and youth with CP completed a modified version of a Family Needs Survey and a demographic questionnaire. Children's gross motor function level was classified using the Gross Motor Function Classification System. Total number of family needs differed based on gross motor function level (P < 0.001) but not age. Parents of children/youth who use wheeled mobility expressed the highest number of family needs, while parents of children/youth who walk without restrictions expressed the fewest needs. Family needs for Information (P= 0.001), Support (P= 0.001), Community Services (P < 0.001) and Finances (P < 0.001) differed based on children's gross motor function level. Over 50% of parents expressed family needs for information on current and future services, planning for the future, help in locating community activities and more personal time. Parents of children and youth who use wheeled mobility were more likely to express the need for help in paying for home modifications, equipment, services and locating sitters, respite care providers and community activities. The gross motor function of children/youth with CP has implications for collaboration with families to identify needs and co-ordinate services. Health professionals have a role to assist families with information needs and locating community services and leisure activities. Family needs for future planning suggest that health professionals should assist families to prepare for key periods in the lives of their children with CP.

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107 citations in Web of Science
114 citations in Scopus

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UN Sustainable Development Goals (SDGs)

This publication has contributed to the advancement of the following goals:

#3 Good Health and Well-Being

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Collaboration types
Domestic collaboration
Web of Science research areas
Pediatrics
Psychology, Developmental
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