. (2014). Caregiving burden and parent-child quality of life outcomes in neurodevelopmental conditions: The mediating role of behavioral disengagement. Setttings, 21, 320-328. doi: 10.1007/s10880-014-9412-5 Caregiving Method. 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 (SEM) was used to test a mediation model and ascertain direct and indirect effects among study variables.
Journal of Clinical Psychology in MedicalResults. 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.
Conclusions.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.
Keywords.Caregiving burden, quality of life, behavioral disengagement.Caring for a child with a neurodevelopmental condition is a particularly challenging parenting situation, because the increased levels of caregiving stress may exert negative effects on parents' and their children's adaptation outcomes (Garner et al., 2011; Peer, 2011). Given the fact that coping strategies can facilitate or hinder positive family adaptation to caregiving stress (Lin, 2000), the examination of parents' coping behaviors, such as behavioral disengagement, may be useful to improve our understanding of modifiable variables linking parent-child stressors and outcomes. In addition, empirical data on this topic will contribute to develop effective interventions aimed at promoting the successful coping and adjustment of parents and their children with neurodevelopmental conditions. Families and parents of children with chronic conditions are at greater risk for increased stress and decreased quality of life (QL), if compared to families of typically developing children (Brehaut et al., 2004;Raina et al., 2005). Moreover, the risk for psychological problems, which, along with caregiving demands, are strong predictors of caregivers' psychological well-being (Raina et al., 2005), is exacerbated in children who have conditions that affect the central nervous system, especially seizure disorders, and in adolescents who have a long-term physical disability, such as cerebral palsy (CCD & CPACFH, 1993).Within the "disability-stress-coping model", psychosocial stresses (such as caregiving burden) are hypothesized to influence adaptation outcomes in both direct and indirec...