A Model for Internalized Stigma in Children and Adolescents with Epilepsy

Objective Perceptions of stigma in children and adolescents with epilepsy are associated with higher rates of mental health problems. The purpose of this study was to test relationships in a model that identified variables most strongly associated with perceptions of stigma in children and adolescents with epilepsy. Our ultimate goal is to develop a theoretical foundation for future intervention research by identifying variables associated with perceptions of stigma that are potentially amenable to psychosocial interventions. Methods Participants were 173 children and adolescents with epilepsy who were between 9 and 14 years of age. Data were collected in telephone interviews. Stigma was measured using a self-report scale. Data were analyzed using structural equation modeling. Results Greater need for information and support, more fear and worry related to having epilepsy, greater seizure severity, and younger age were significantly associated with greater perceptions of stigma. Female gender, greater need for information and support, having at least one seizure in the past year, and lower self-efficacy for seizure management were significantly associated with more fear and worry related to having epilepsy. Conclusions Findings suggest that perceptions of stigma are associated with two variables that are amenable to psychosocial interventions: fear and worry about having epilepsy and need for information and support. Future research should test the efficacy of interventions that reduce fear and worry, provide information about epilepsy, and reduce need for support