Abstracts

Rationale: Improving the employment rate and workplace environment for people with epilepsy is a critical issue for job retention and good quality of life. Whether to disclose epilepsy in the workplace is one of the most challenging decisions facing sufferers. Previous studies have investigated the trade-off between the negative connotations associated with disability disclosure and the potential benefits. However, few studies have examined the positive and negative factors that affect the decision to disclose disability. This study tried to identify the factors affecting disclosure of epilepsy in the workplace based on a decision-making model.


Methods: The study included 193 patients with epilepsy (112 men, aged 18–66 years) who underwent comprehensive assessment including long-term video-EEG monitoring, neuroimaging studies, and neuropsychological and psychiatric assessment in our epilepsy monitoring unit. Data were obtained from medical records and self-reporting questionnaires. The outcome variable was disclosure of epilepsy. Predictive variables were selected based on the disclosure decision-making model: individual factors (i.e., age, sex, age at seizure onset, seizure frequency, primary generalized tonic-clonic seizures and/or focal to bilateral tonic-clonic seizures in the last 2 years, experience of viewing own seizures, and felt stigma); relational factors (i.e., experiences of discrimination, enacted stigma, and social support). Data were analyzed using a logistic regression analysis model.


Results: Our results indicated that 43.5% of patients disclosed epilepsy to their employer. The factors that significantly affected disclosure of epilepsy were experience of discrimination (odds ratio [OR] 7.78, 95% confidence interval [CI] 2.84–21.34, p < 0.01), experience of viewing own seizures via video-recording (OR 3.51, 95% CI 1.27–9.72, p < 0.05), and level of enacted stigma (OR 0.69, 95% CI 10.91–1.62, p < 0.05).


Conclusions: This study provides the first insights into the factors affecting disclosure of epilepsy among patients with epilepsy in the workplace in Japan. The results indicate that the decision to disclose epilepsy is affected by both individual factors such as experience of viewing own seizures and relational factors such as experience of discrimination and enacted stigma. Clinicians and occupational rehabilitation professionals can help patients gain better understanding of their condition by showing seizure video-recordings, and provide psychosocial care for self-stigma. Communicating with employers with the patients’ agreement would also be effective and reassuring for establishing reasonable accommodation in the workplace. Interventions targeted to reduce public stigma of epilepsy, such as awareness campaigns, may also improve employment outcomes. The present findings will help advocates to determine effective practices and to provide better medical and vocational services for patients with epilepsy.


Funding: This work was supported by Japan Society for the Grant-in-Aid for Early-Career Scientists [grant number 24K18696], TUMUG Support Program from Center for Diversity, Equity, and Inclusion, Tohoku University, and Meiji Yasuda Mental Health Foundation Grant.