Indicators of distress in families of children with cerebral palsy

Abstract

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.

Implications for Rehabilitation

• School age is a stage of development that brings new challenges to a child with cerebral palsy.

• Parents of school-aged children with cerebral palsy experience high levels of stress, time constraints and emotional and financial burden.

• The child’s activity limitations and especially behavioral difficulties may contribute to greater family distress.

• Family well-being should be monitored periodically, and appropriate resources and supports provided when families are in distress.

Keywords::

• Cerebral palsy
• family functioning
• family stress
• behavioral difficulties

Acknowledgements

Many thanks to Nick Hall, research coordinator of this project, and to Anna Radzioch for assisting with manuscript preparation. We wish to acknowledge occupational therapists Cynthia Perlman and Amy Brownstein, and psychologists Lisa Steinbach, Nancy Marget, Mafalda Porporino, Terry Viola and Chantalle Martel for assistance in testing, and Gevorg Chilingaryan for statistical consultation. The research team benefited from infrastructure provided by the Montreal Children’s Hospital-Research Institute and the Centre de recherche interdisciplinaire en réadaptation du Montréal métropolitain (CRIR); both funded by Fonds de la recherche en sante du Quebec. We are especially grateful to the families and children who participated in this study. This paper was a platform presentation at the American Academy of Cerebral Palsy & Developmental Medicine annual meeting in Washington, DC, September, 2010.

Declaration of Interest: The authors did not receive any financial support related to this project, and have no potential conflict of interest to declare. This study was supported by the Cerebral Palsy International Research Foundation (USA).