Abstracts

Rationale: Self-stigma is a major obstacle that patients with epilepsy face in their daily life. Self-stigma can be conceptualized as both enacted and felt. The dual issues of enacted and felt stigma have long been concerned, and many previous studies among chronic disease indicated predictors of such stigma. Patients with temporal lobe epilepsy (TLE) often encounter cognitive, psychiatric and psychosocial difficulties, which could impact self-perception and social participation. The aim of this study was to identify the factors that influence enacted and felt stigma in patients with TLE, considering both medical and psychosocial factors.

Methods: The sample consisted of 149 patients with TLE (66 men and 83 women, aged 18-75 years) who underwent comprehensive assessment including long-term video-EEG monitoring, and psychiatric assessment in our epilepsy monitoring unit from October 2015 to April 2022. To measure perceived stigma, the Japanese version of the Epilepsy Stigma Scale was used. The other variables included demographic and seizure-related variables (i.e., age, gender, duration of epilepsy, seizure frequency, number of anti-seizure drugs), psychological variables (i.e., depression, seizure worry, epilepsy self-efficacy, cognitive function), and social variables (i.e., education level, employment, emotional/informational support, tangible support, affectionate support, positive social interaction). Data were analyzed using a multiple regression analysis method. The study was approved by the ethical committee of Tohoku University Graduate School of Medicine.

Results: The mean enacted stigma and felt stigma scores were 3.6 ± 1.4 and 3.9 ± 1.7, respectively. Higher duration of epilepsy (p < .05), higher seizure worry (p < .01), and lower social function (p < .01) were found to contribute significantly to higher enacted stigma. The predictors accounted for 44% of the variance in enacted stigma (R² = .51, ΔR² = .44, F [16, 126] = 8.09, p = .00). Higher duration of epilepsy (p < .05), higher seizure worry (p < .01) and positive social interaction (p < .05) were found to contribute significantly to higher felt stigma. The predictors accounted for 36% of the variance in enacted stigma (R² = .43, ΔR² = .36, F [16, 126] = 6.01, p = .00).

Conclusions: The present study implies that long duration of living with epilepsy and anxiety about seizure increase both enacted and felt stigma. Interestingly, we found one of the preventative factors of enacted stigma was the satisfaction level of social functioning. Accordingly, practical support for obtaining new jobs and promoting social participation may be considered effective in reducing enacted stigma. On the other hand, we found felt stigma was lessened by increasing the level of positive social interaction. This can be promoted by peer support and group psychotherapy. Therefore, psychologists in epilepsy care should carefully assess both types of stigma and employ effective supportive means according to the empirical studies.

Funding: This work was supported by Japan Society for the Promotion of Science Grant-in-Aid for Young Scientists (B) [grant number K17K16623] and Grant-in-Aid for Encouragement of Scientists [grant number 22H04016]