Indicators of distress in families of children with cerebral palsy

PURPOSE: To describe family distress as reported by parents of children with cerebral palsy (CP) and to identify factors associated with distress. METHOD: In this descriptive, historical cohort study, parents of school-age children (9.2 ± 2.1 years) with CP completed the Parenting Stress Index, the Impact on Family Scale and family-related items on the Child Health Questionnaire. Predictor variables considered were sociodemographic factors, motor, cognitive and behavioral difficulties and functional limitations. These were assessed using the Gross Motor Function Measure, Leiter IQ, Strengths and Difficulties Questionnaire and Vineland Adaptive Behavior Scale. RESULTS: Parents of 95 children were recruited, of whom 45% were highly stressed and 11% defensive. Half indicated that their child's health impacted on their time, emotional status and family activities. Family distress measures were modestly associated with motor (r = 0.30-0.48) and cognitive abilities (r = 0.29-0.37) but more strongly correlated with particular behavioral difficulties (r = -0.42 to 0.55). Activity limitations across domains were highly associated with measures of distress. CONCLUSIONS: Parents of school-aged children with CP are likely to experience high stress, increased time constraints and financial and psychological burden. Findings illustrate the need to monitor family functioning intermittently as the child develops and direct appropriate resources to optimize child and family well-being.