Investigating the relationship between epilepsy disclosure behaviors and stigmatization perceptions in children with...

To examine the relationship between epilepsy diagnosis behavior and perceptions of stigma among children with epilepsy and their parents.

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)".

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).

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.