Family-centered caregiving and well-being of parents of children with disabilities: Linking process with outcome

Abstract

Objective: This study examined the strength of the relationship between parents' perceptions of family-centered, professionally provided caregiving and their emotional well-being (feelings of distress and depression). This was done in the context of other factors that might affect well-being (child behavior problems, coping strategies of parents, protective factors in the social environment, child factors related to disability, and family factors). Method: We asked 164 parents of children with nonprogressive neurodevelopmental disorders (primarily cerebral palsy, spina bifida, or hydrocephalus) to complete a series of instruments measuring the constructs of interest. Results: Structural equation modeling showed that more family- centered caregiving was a significant predictor of parents' well-being. The most important predictors of well-being were child behavior problems and protective factors in the social environment. Conclusions: Services are most beneficial when they are delivered in a family-centered manner and address parent-identified issues such as the availability of social support, family functioning, and child behavior problems.