Department of Psychiatry, Saitama Medical Center, Saitama Medical University, Saitama, Japan.
Mara Hospital, Bethel Epilepsy Center, Bielefeld University, Bielefeld, Germany.
Epilepsia Open. 2022 Dec;7(4):792-801. doi: 10.1002/epi4.12661. Epub 2022 Oct 25.
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.
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.
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%.
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.
癫痫患者背负着沉重的污名。尽管有证据表明，自我污名与对癫痫的缺乏了解相伴而生，但在日本尚无相关研究。本研究旨在确定导致日本癫痫患者产生自我污名的因素。
我们进行了一项在线问卷调查。共有 310 名患者（平均年龄 47.8±11.9 岁）完成了问卷，而该问卷网站的总注册用户数为 2021 年 7 月 29 日至 8 月 2 日的 28315 人。我们询问了人口统计学变量、治疗满意度、生活受限情况、支持状况、发作频率、癫痫自我污名量表（ESSS）、罗森伯格自尊量表（RSES）和癫痫知识量表（EKS）。我们通过 Spearman 秩相关分析对自我污名、自尊、癫痫知识和发作频率之间的关联进行了统计分析。
EKS 的平均值为 40.19±18.75，ESSS 为 17.69±6.25，RSES 为 26.02±6.13。我们发现自尊与自我污名之间存在显著的中度负相关（P<0.001，ρ=-0.423），自尊与知识之间存在显著的弱正相关（P=0.005，ρ=0.177），发作频率与自我污名之间存在显著的弱负相关（P<0.001，ρ=-0.162）。在 186 名正在工作或学习的受访者中，有 91 名（49%）因癫痫经历过任何形式的歧视。使用社会心理支持，即参加癫痫自助团体和教育项目的比例为 5.8%。
自我污名的严重程度与知识之间没有相关性，而自尊与知识之间存在正相关（P=0.005，ρ=0.177）。发作频率与自我污名之间存在负相关（p<0.001，ρ=-0.162）。这些结果表明，充足的知识可能会提高自尊，从而减少自我污名。此外，单纯控制发作的短期治疗不足以减少自我污名。通过终身提高自我效能感，传播让人们充分了解癫痫并对癫痫产生积极认知的信息，可能会减少自我污名。
