The Disability Paradox Revisited: Quality of Life and Family Caregiving in Pediatric Cerebral Palsy

Parents who have children with cerebral palsy (CP) have been reported to have a more impaired QL and higher levels of burden than parents of typically developing children; however, little is known about the positive dimensions of their caregiving experience. In this study, WHOQOL-Bref and The Revised Burden Measure were administered to a sample of 105 parents of children/adolescents with CP (clinical group) and 117 parents of children/adolescents with no disabilities (control group). Despite the fact that parents of children with CP reported more Subjective Burden and less caregiving Uplifts, there were more similarities than differences in the variables compared between clinical and control groups. For parents of children with CP, the associations between Burden dimensions and QL, and between caregiving Uplifts and QL, were respectively moderate and weak. Caregiving Uplifts were found to moderate the links between Objective Burden and Psychological QL, and between Relationship Burden and Social QL. In addition, differential main effects of Burden dimensions and caregiving Uplifts were verified for Physical, Psychological and Social QL domains. These results highlight the adaptation variability of parents who have children with CP, as well as the importance of acknowledging caregiving uplifts as a resource that may attenuate the impact of burden on their QL.