June 2, 2020

The Self-Stigma of Patients with Epilepsy in Japan: A Qualitative Approach

Abstract, published in Epilepsy & Behavior

The mental health of patients with epilepsy represents a substantial public health concern in Japan. For instance, the Japanese term for epilepsy, “tenkan”, has the negative meaning of “mad” and “a violent temperament that is apt to be infatuated”. Although epilepsy is now understood as a disease caused by abnormal neuronal activity in the brain, discrimination and stigma against people with epilepsy remain deeply rooted in Japanese culture. Understandably, this stigma can have a serious impact on the psychology and behavior of individuals with epilepsy.

To our knowledge, no studies have clarified the formation process or examined the treatment of self-stigma in patients with epilepsy in Japan. Characterizing coping strategies and examining methods for reducing self-stigma will increase the understanding of the experiences of patients and facilitate effective psychiatric rehabilitation. Accordingly, the purpose of this study was to investigate the quality and degree of cognition regarding self-stigma and to examine coping strategies in patients with epilepsy living in the community.

The participants were psychiatric outpatients aged 20-65 years who had been diagnosed with epilepsy and visited this psychiatric outpatient clinic between October 1 and December 31, 2016. The researchers conducted semi-structured interviews with 20 patients who consented to participate.

The study revealed details of self-stigma in patients with epilepsy. Patients and their families are often aware of the presence of this self-stigma, but many do not know how to address it. In this study, researchers qualitatively examined self-stigma in patients with epilepsy according to patient narratives. Based on our findings, the team would like to examine intervention methods for reducing self-stigma in patients with epilepsy.

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