Identifying unique profiles of family needs: Perspectives of parents of children and youth with cerebral palsy

Purpose: Cerebral palsy (CP) is a non-progressive neurodevelopmental disorder. Prevalence estimates are from 2 to 4.4 cases/1000 live births. Individual annual costs can exceed $921,000. This study describes unique profiles of family needs based on perspectives of parents of children and youth with CP. Methods: A cross-sectional study was conducted in seven children's hospitals. Parents (n=579) of children/youth with CP completed questionnaires (i.e., Family Needs Survey). Mean child age was 11±4.5 years(2-21 years). Gross motor function was classified using the Gross Motor Function Classification System (GMFCS) (Level I = walks without restrictions, Level V = no independent walking). Results: A K-mean cluster analysis identified four unique profiles of needs: families with low needs (51%), families with very high needs on community and financial resources (20%), families with high needs on child health condition (18%), and families with exceptionally high needs on family functioning (11%). Families with the fewest needs had children at GMFCS Level I, good family relationships, and better access to services. Families in profiles of higher need had children at GMFCS Levels IV and V, fewer resources/services and challenging family relationships. Discussion: The results suggest that profiles of family needs are influenced by child/youth gross motor function; family resources and function; and provision of services. Conclusion: The variability in profiles of family needs reflects the heterogeneity among individuals with CP. Health providers, administrators and policy makers should consider variety and flexibility in health services/resources to best meet the needs of children and youth with CP and their families.