Rationale:
Stigma is a phenomenon defined by Goffman 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. This study aims to evaluate stigma in patients with epilepsy using the Internalized Stigma of Mental Illness
Methods:
This was a cross sectional study performed at the Epilepsy Program of the University of Saskatchewan. Ninety three patients were included. Subjects were recruited using a non-probabilistic sampling method, in a consecutive way. Every patient signed a written consent. 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 included. Mean age was 41.9+15. Fifty one patients were males (54%). Sixty patients had focal seizures (67%), 26 patients were on disability (28%), 35 patients had psychiatric comorbidity (38%), 30 had depression (32%), 16 had anxiety disorder (17%), 22 had somatic comorbid conditions(24%), 58 were seizure free (62%), 25 patients had drug resistant epilepsy (DRE) (275), 66 were from urban areas (71%), 59 patients were not employed (63%) and 17 had epilepsy surgery (18%). The scores of the Internalized Stigma of Mental Illness were explored in the following groups: DRE (60.8+12) vs not DRE (62.2) (p value 0.63), tonic-clonic seizures (63.6) vs not (62.3) (p value 0.51), focal seizures (62.0) vs not (64.3) (p value 0.41), rural (64.5) vs urban areas (62.1) (p value 0.41), disability (67.5) vs non disability (60.9) (p value 0.02), presence of psychiatric comorbidity (66.3) vs none (60.6) (p value 0.03), employed (60.5) vs not employed (64.0) (p value 0.20), epilepsy surgery (64.1) vs not (62.5) (p value 0.62), presence of depression (66.2) vs not (61.1) (p value 0.70), presence of anxiety (66.1) vs not (61.1) (p value 0.24).
Conclusions:
This is the first study in Canadian Population exploring stigma in patients with epilepsy. Using the Internalized Stigma of Mental Illness we identified that patients on disability but also patients with psychiatric comorbidity have higher scores of stigma. The scores were not different in patients with and without drug resistant epilepsy. Also the scores of stigma were not different between types of seizures. This study will help to understand the complex association of stigma in patients with epilepsy.
Funding: Royal University Hospital Foundation, Saskatchewan health research Foundation and the University of Saskatchewan.