Family Cohesion, Stigma, and Quality of Life in Dyads of Children with Epilepsy and Their Parents

Abstract

Objective To examine the mediating role of stigma on the links between family cohesion and quality of life (QoL) in children with epilepsy and their parents. Methods Participants were 192 families attending three Portuguese public hospitals. Children and parents completed self-report measures of family cohesion, stigma, QoL, and health-related QoL (HRQoL). Neurologists assessed clinical variables. Structural equation modeling within the framework of the actor-partner interdependence model was used. Results The final model showed a good fit to the data, explaining 43% and 35% of the QoL outcomes of children and parents, respectively. Family cohesion was positively linked to QoL outcomes, directly for children and parents, and indirectly for children only, by way of negative links with perceived stigma. At the dyadic level, parents' perceptions of family cohesion were positively associated with children's HRQoL. Conclusions A routine screening of those patients experiencing poorer HRQoL should include the assessment of family relationships and stigma.