A study of factors influencing self‐stigma in people with epilepsy: A nationwide online questionnaire survey in Japan

OBJECTIVE: Epilepsy carries a significant stigma. While there is some evidence that self‐stigma accompanies a lack of knowledge about epilepsy, there are no studies in Japan. This study aimed to determine factors contributing to self‐stigma in Japan. METHODS: We conducted an online questionnaire survey. Three hundred and ten patients completed the questionnaire (mean age of 47.8 ± 11.9) in contrast to the total registered users on the questionnaire site as 28 315 from Jul 29 to Aug 2, 2021. We asked about demographic variables, satisfaction with treatment, limitations in life, support status, seizure frequency, the Epilepsy Self‐Stigma Scale (ESSS), the Rosenberg Self‐Esteem Scale (RSES), and the Epilepsy Knowledge Scale (EKS). We conducted the statistical analysis on self‐stigma, self‐esteem, knowledge of epilepsy, and seizure frequency associations by Spearman's rank correlation. RESULTS: The mean value of the EKS was 40.19 ± 18.75, the ESSS was 17.69 ± 6.25, and the RSES was 26.02 ± 6.13. We identified a significant moderate negative correlation between self‐esteem and self‐stigma (P < .001, ρ = −.423), a significant weak positive correlation between self‐esteem and knowledge (P = .005, ρ = .177), and a significant weak negative correlation between seizure frequency and self‐stigma (P < .001, ρ = −.162). Of the 186 respondents who were working or studying, 91 (49%) participants had experienced any discrimination due to epilepsy. The use of psychosocial support, that is, participating in epilepsy self‐help groups and educational programs, was 5.8%. SIGNIFICANCE: There was no correlation between the strength of self‐stigma and the knowledge, while there was a positive correlation between self‐esteem and knowledge (P = .005, ρ = .177). There was a negative and weak correlation between seizure frequency and self‐stigma (p < .001, ρ = −.162). These results suggest that sufficient knowledge may improve the self‐esteem and thus reduce the self‐stigma. In addition, short‐term treatment for seizure control is insufficient to reduce self‐stigma. The dissemination for people to enable sufficient epilepsy knowledge and positive perceptions of epilepsy by increasing self‐efficacy throughout a lifetime may reduce self‐stigma.