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* *Department of Physical Therapy and Rehabilitation Sciences, Drexel University †Shriners Hospitals for Children, Philadelphia, PA, and ‡Shriners Hospitals for Children Northern California, Sacramento, CA, USA Accepted for publication 24 August 2009 Keywords cerebral palsy, children, family-centred services, family needs, needs assessment, youth Correspondence: Robert J. Palisano, Drexel University, Department of Physical Therapy and Rehabilitation Sciences, 245 N. Broad Street, Philadelphia, PA 19102-1192, USA E-mail: robert.j.palisano@drexel. edu 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. Robert J. Palisano, PT, ScD is Professor; Nihad Almarsi, PT, MS is a doctoral candidate in Rehabilitation Sciences (naa45@drexel.edu); Lisa Chiarello, PT, PhD, PCS is Associate Professor (lisa.chiarello@drexel.edu); Margo Orlin, PT, PhD is Assistant Professor (margo.n.orlin@drexel.edu); Jill Maggs, DocEd, MMedSci, MCSP is Project Manager (jill.maggs@drexel.edu), Drexel University, Department of Physical Therapy and Rehabilitation Sciences, 245 N. Broad Street, Philadelphia, PA 19102-1192, USA.Anita Bagley, PhD is Co-Director of the Motion Analysis Laboratory, Shriners Hospitals for Children Northern California, Sacramento, CA 91817, USA (ABagley@Shrinenet.org). Child: care, health and development Original Article doi:10.1111/j.1365-2214.2009.01030.x © 2009 Blackwell Publishing Ltd 85