Caregiving burden and parent-child quality of life outcomes in neurodevelopmental conditions: the mediating role of behavioral disengagement.

Abstract

The aim of this study was to analyze the direct and indirect effects, via parents' behavioral disengagement coping, of caregiving burden on the quality of life (QL) of parents and their children with neurodevelopmental conditions. Self-completion questionnaires on the target variables were administered to a sample of 156 parents who had a child with a neurodevelopmental condition, namely epilepsy (n=65) and cerebral palsy (n=91). Structural equation modeling was used to test a mediation model and ascertain direct and indirect effects among study variables. Significant direct effects of caregiving burden on parents' and their children's QL were found. Additionally, caregiving burden had a significant indirect effect on parents' QL, via behavioral disengagement, but not on their children's QL. Finally, this model was found to be invariant across conditions and patients' age groups. Caregiving burden may be elected as a strategic intervention target to improve parent-child QL outcomes in neuropediatric settings. Parents should be encouraged to avoid or reduce behavioral disengagement coping in relation to their caregiving stress, and alternatively adopt active coping strategies that may positively affect their children's QL and impede or attenuate the deleterious effects of caregiving burden on their own QL.