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Family needs of parents of children and youth with cerebral palsy.
Child Care Health Dev. 2010 Jan; 36(1):85-92.CC

Abstract

BACKGROUND

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.

METHODS

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.

RESULTS

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.

CONCLUSIONS

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.

Authors+Show Affiliations

Department of Physical Therapy and Rehabilitation Sciences, Drexel University, 245 N. Broad Street, Philadelphia, PA 19102-1192, USA. robert.j.palisano@drexel.eduNo affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info available

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

19961501

Citation

Palisano, R J., et al. "Family Needs of Parents of Children and Youth With Cerebral Palsy." Child: Care, Health and Development, vol. 36, no. 1, 2010, pp. 85-92.
Palisano RJ, Almarsi N, Chiarello LA, et al. Family needs of parents of children and youth with cerebral palsy. Child Care Health Dev. 2010;36(1):85-92.
Palisano, R. J., Almarsi, N., Chiarello, L. A., Orlin, M. N., Bagley, A., & Maggs, J. (2010). Family needs of parents of children and youth with cerebral palsy. Child: Care, Health and Development, 36(1), 85-92. https://doi.org/10.1111/j.1365-2214.2009.01030.x
Palisano RJ, et al. Family Needs of Parents of Children and Youth With Cerebral Palsy. Child Care Health Dev. 2010;36(1):85-92. PubMed PMID: 19961501.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Family needs of parents of children and youth with cerebral palsy. AU - Palisano,R J, AU - Almarsi,N, AU - Chiarello,L A, AU - Orlin,M N, AU - Bagley,A, AU - Maggs,J, Y1 - 2009/11/30/ PY - 2009/12/8/entrez PY - 2009/12/8/pubmed PY - 2010/4/29/medline SP - 85 EP - 92 JF - Child: care, health and development JO - Child Care Health Dev VL - 36 IS - 1 N2 - BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. SN - 1365-2214 UR - https://www.unboundmedicine.com/medline/citation/19961501/Family_needs_of_parents_of_children_and_youth_with_cerebral_palsy_ L2 - https://doi.org/10.1111/j.1365-2214.2009.01030.x DB - PRIME DP - Unbound Medicine ER -