Self-stigma among people with epilepsy: Comparison between Germany and Japan.

Abstract

Objective: Epilepsy is a neurological disorder characterized by recurrent seizures, with prevalence and treatment availability varying across countries. Stigma associated with epilepsy significantly impacts the quality of life (QOL) of people with epilepsy (PWE). This study aimed to compare self-stigma, depressive symptoms, anxiety, and QOL in PWE treated at tertiary epilepsy centers in Germany and Japan. It also explored cultural differences influencing these experiences.

Methods: Participants were recruited from the Bethel Epilepsy Center in Germany and the Comprehensive Epilepsy Centers at Saitama Medical University in Japan. Eligible participants were PWE aged 18 and above, receiving treatment at these facilities, meeting language requirements, and capable of providing informed consent. Data collection occurred from May 2022 to April 2023 using questionnaires assessing self-stigma (Epilepsy Self-Stigma Scale, ESSS), self-esteem, depressive symptoms, anxiety, knowledge, and QOL. Comparisons between Japanese and German samples and associations among variables were analyzed using t-tests, chi-square tests, and regression analyses.

Results: PWE in Japan reported higher levels of self-stigma, depressive symptoms, and anxiety compared to those in Germany. Conversely, they demonstrated lower epilepsy knowledge, self-esteem, and overall health. Significant correlations emerged among variables; however, differences in ESSS scores remained significant in a multiple regression model, highlighting persistent cultural variances.

Significance: The findings reveal marked differences in self-stigma and psychosocial factors between Japanese and German PWE. Japanese participants experienced higher self-stigma and psychological distress, potentially due to disparities in healthcare delivery systems, institutional frameworks, and social support structures. Healthcare providers should address these contextual factors in epilepsy care. Future studies should explore systemic influences on self-stigma through long-term, multi-center research in diverse healthcare settings to improve support for PWE globally.

Plain language summary: This study compared how people with epilepsy treated in two tertiary epilepsy centers in Japan and Germany feel about their condition and themselves. The research found that Japanese patients felt more stigma (negative self-judgment) about having epilepsy and reported more feelings of depression and anxiety than German patients. They also knew less about epilepsy and felt less confident about themselves. These findings suggest that differences in healthcare systems and social attitudes between the two countries may affect how people cope with epilepsy, highlighting the need for better support systems in Japan.