Epilepsy is a chronic brain disease caused by various factors. Its main symptom is recurrent seizures (epileptic seizures) caused by excessive discharge of cerebral nerve cells. With a prevalence rate is about 1 in 100, there are about 50 million patients worldwide, and despite being a common neurological disease that is by no means rare, prejudice from society due to its historical background remains deeply rooted. Epilepsy is classified as a psychiatric disorder in the administrative division in Japan, and a psychiatrist should be involved because of its characteristics. Social stigma is internalized to patients and becomes self-stigma. High self-stigma hinders recovery from the disease, as it may cause delays in consultation, difficulty in continuing treatment, and decreased self-esteem and self-efficacy of the patients with epilepsy (PWE). Furthermore, it affects the prognosis and quality of life of PWE.
Since 2016, we have been conducting research to clarify the quality and degree of self-stigma cognition in PWE in Japan, the formation process, and how to deal with perceived stigma. Patients' self-stigma, depressed mood, and self-esteem are more complexly affected by seizure frequency and treatment status than by mere epilepsy classification. In addition, patients should gain correct knowledge about epilepsy and devise ways to prevent and treat seizures and epilepsy itself. Even if there is a uncontrol seizure, there is a need for a friend who acknowledges it and is able to listen and consult. It has been shown to have a positive effect on the quality of life by the lives of patients through psychosocial intervention programs.
Herein, we will introduce the research that the authors have conducted so far, and examine the clinical way and future research direction for reducing self-stigma in PWE in Japan.
Authors' abstract
The Reality and towards Effective Intervention for Reducing Self-stigma in Patients with Epilepsy
1 Department of Psychiatry, Saitama Medical Center, Saitama Medical University
2 Mara Hospital, Epilepsy Center Bethel, Bielefeld University
3 Department of Psychology, Showa Women's University
4 Faculty of Human Development and Education, Kyoto Women's University
5 Shinjuku Neuro Clinic
2 Mara Hospital, Epilepsy Center Bethel, Bielefeld University
3 Department of Psychology, Showa Women's University
4 Faculty of Human Development and Education, Kyoto Women's University
5 Shinjuku Neuro Clinic
Psychiatria et Neurologia Japonica
124: 786-793, 2022
<Keywords:epilepsy, prejudice, self-stigma, quality of life, Epilepsy Self-Stigma Scale>