Badanie związku między ujawnianiem epilepsji a postrzeganiem stygmatyzacji u dzieci z epilepsją i ich rodziców

OBJECTIVES: To examine the relationship between epilepsy diagnosis behavior and perceptions of stigma among children with epilepsy and their parents. METHODS: This study is descriptive, cross-sectional, and correlational. The sample of the study conducted in Türkiye consisted of children with epilepsy and their parents aged 9-16 years (n = 94). Data were collected face-to-face using the "Child and Parent Information Form", the "Epilepsy Disclosure Scale - Child and Parent Version (EDS)", and the "Stigma Scale Perceived by Children with Epilepsy and Their Parents (SSP)". RESULTS: The mean age of the children participating in the study was 11.79 ± 1.85 years, and 57.4% were male. The mean total score on the EDS for children was 6.26 ± 3.30, and the mean SSP score was 1.98 ± 0.91; for parents, the scores were 6.49 ± 3.59 and 2.54 ± 0.99, respectively. In children, the type of epilepsy significantly affected SSP scores (p = 0.008), receiving psychological support significantly affected SSP scores (p = 0.034), and family history of epilepsy significantly affected EDS scores (p = 0.020). In parents, age (p = 0.006) and education level (p = 0.001) significantly affected EDS scores, and age also affected SSP scores (p = 0.047). A significant positive correlation was found between SSP and EDS behavior in both children (r = 0.643) and parents (r = 0.503); p < 0.001). In hierarchical regression analyses, perceived stigma remained a significant independent predictor of children's EDS scores after controlling for family history of epilepsy, psychological support, and type of epilepsy (β = 0.448; ΔR2 = 0.135; p = 0.006), whereas in the parent model, its effect became marginal (β = 0.255; p = 0.059) when age and education level were controlled, with education level emerging as the strongest predictor (β = 0.425; p = 0.008). Parents reported significantly higher SSP compared with their children (t = -4.936; p < 0.001), but no significant difference was observed for EDS (p = 0.667). Significant positive associations were also found between children's and parents' SSP (r = 0.673; p < 0.001) and EDS (r = 0.423; p = 0.003). CONCLUSION: Perceived stigma in children with epilepsy and their parents significantly predicts concealment behavior, and both stigma perception and concealment behavior are shared family experiences. It is recommended that family-based psychosocial counseling and training interventions be planned in nursing care to address stigma coping strategies.