Family Priorities for Activity and Participation of Children and Youth With Cerebral Palsy

BACKGROUND: Understanding family priorities for children and youth with cerebral palsy is essential for family-centered service. OBJECTIVE: The purposes of this study were: (1) to identify family priorities for activity and participation in children and youth with cerebral palsy and (2) to determine differences based on age and Gross Motor Functional Classification System (GMFCS) level. DESIGN: Five hundred eighty-five children and youth with cerebral palsy and their caregivers participated at regional children's hospitals. The children and youth were 2 to 21 years of age; 56% were male, and 44% were female. Their caregivers, predominantly mothers (80%), had a mean age of 40.3 years (SD=9.3). The Canadian Occupational Performance Measure was administered to caregivers to identify their priorities for their children. The priorities were coded into 3 categories (daily activities, productivity, and leisure) and 13 subcategories. The GMFCS levels were determined by assessors who met the criterion for reliability. Friedman and Kruskal-Wallis one-way analyses of variance were used to examine differences in priorities. RESULTS: Parents of children in all age groups and GMFCS levels II to V identified more priorities for daily activities. Parents of school-aged children and youth had more priorities for productivity than parents of younger children. For parents of children in all age groups and motor function levels, self-care was the most frequent priority subcategory. Sixty-one percent of parents identified at least one priority related to mobility. LIMITATIONS: The study did not include qualitative analysis of priorities of parents. CONCLUSIONS: Parents' priorities for their children and youth with cerebral palsy differed depending on age and gross motor function level; however, the most frequent priority for all age groups was daily activities. Interviews with families are recommended for identifying outcomes for activity and participation and developing an intervention plan.