INTERNALIZED STIGMA IN PEOPLE WITH EPILEPSY IN THE PROVINCE OF SASKATCHEWAN, CANADA

Background and objective: Goffman defined stigma as a phenomenon in which a person is discredited or rejected by society because of a particular attribute, in a way that spoils their normal identity. It may be related to 'external deformations' such as physical disabilities and diseases, 'deviations of personal traits' such as being unemployed or addicted to drugs, and 'tribal stigmas' based on, for example, ethnicity or nationality. Self-perception is as critical as public attitudes toward people with epilepsy. Therefore, understanding the relationship between factors that play crucial roles in developing and sustaining internalized stigma among people with epilepsy is important to expand our knowledge about these factors. This study aimed to evaluate stigma for Canadian people with epilepsy for the first time using the Internalized Stigma of Mental Illness (ISMI) scale. Methods: This was a cross-sectional study performed at the Epilepsy Program of the University of Saskatchewan, after approval by the Human Research Ethics Review Board (ID 357). Ninety-three patients were included. Participants were recruited using a non-probabilistic sampling method in a consecutive way. Every patient signed a written consent form. The inclusion criteria were the following: a) patients with focal and generalized epilepsy, b) any consecutive patients attending to the clinics in the established period of study, c) patient must be able to read and understand English, d) patients older than 17 were recruited. The Internalized Stigma of Mental Illness has 29 questions and measures the subjective experience of stigma, with subscales measuring Alienation, Stereotype Endorsement, Perceived Discrimination, Social Withdrawal and Stigma Resistance. Each item has four response options scored from 1 to 4 (1 = not at all to 4 = totally). This scale has been used to assess stigma in mental conditions but has not been used in patients with epilepsy. Results: Ninety-three patients were recruited. Mean age was 41.9+15 years. Fifty-two patients were males (56%). Sixty patients had focal seizures (64%) ( 59.6% male vs 70.7% female) , 26 patients were on disability (28%)(26.9% male vs 29.3% female), 35 patients had psychiatric comorbidity (38%)( 36.5% male vs 39% female), 30 had depression (32%)( 30.8% male vs 34.1% female) , 16 had an anxiety disorder (17%) ( 15.4% male vs 19.5% female), 22 had somatic comorbid conditions (24%) ( 28.8% male vs 17.1% female), 59 were seizure-free (63%) ( 63.5% male vs 63.4% female), 25 patients had drug resistant epilepsy (27%) ( 25% male vs 29.3% female), 67 were from urban areas (72%), 60 patients were not employed (64%) ( 61.5% male vs 68.3% female), and 17 had epilepsy surgery (18%) ( 11.5% male vs 26.8% female). The scores of the Internalized Stigma of Mental Illness were explored in the following groups: DRE (58.4) vs not DRE (60.3) (p-value 0.6), tonic-clonic seizures (63.6) vs not (62.3) (p-value 0.6), focal seizures (62.0) vs not (64.3) (p-value 0.4), disability (67) vs non disability (58.5) (p-value 0.01), epilepsy surgery (62.5) vs not (60.5) (p-value 0.6), presence of depression (65.5) vs not (58.8) (p-value 0.03), presence of anxiety (65.1) vs not (60.1) (p-value = 0.2). Conclusions: This is the first study in the Canadian population exploring stigma in patients with epilepsy. Using the Internalized Stigma of Mental Illness, we demonstrated that patients on disability and those with psychiatric comorbidity have higher stigma scores. There was no score difference in patients with and without drug-resistant epilepsy. Also, the scores of stigma appeared to be similar among different seizure types. This study will help to understand the complex association of stigma in patients with epilepsy