Enacted stigma among patients with epilepsy and intellectual impairment

• Enacted stigma in cases with epilepsy and intellectual impairment is frequent.
• Enacted stigma correlates with perceived stigma.
• Our study results support the campaign against predictors of stigma.
• Our study results support measures at the individual and public health levels.

BackgroundThe limited research on stigma and its determinants in patients with epilepsy and intellectual impairment motivated our study in this area.PurposeWe assessed enacted stigma and its determining factors in Bulgarian patients with refractory epilepsy and intellectual impairment.MethodsWe conducted a study of 64 patients with refractory epilepsy and intellectual impairment based on a questionnaire designed for people with intellectual impairment (stigma scale) and a purposeful interview on clinical factors and real experiences of discrimination, insults and/or threats, and attacks.ResultsA real experience of discrimination was reported by 51 (91.07%) of the interviewed participants, 34 (60.71%) of whom had been insulted and/or threatened and attacked because of their health problems. The experience of insults and/or threats and attacks was more frequent in cases with moderate intellectual impairment (χ2 = 5.17, P < 0.05). Discrimination was reported more rarely by older patients (F = 3.23, P < 0.05). The participants who gave a greater number of positive answers about experienced discrimination or insults and/or threats and attacks reported a more pronounced perceived stigma (F = 19.30, P < 0.001 and F = 12.91, P < 0.001, respectively). Perceived stigma and the experience of insults and/or threats and attacks proved to be predictors of discrimination on multivariate regression analysis (F = 40.54, P < 0.001).ConclusionsWe have affirmed very frequent enacted stigmatization in Bulgarian patients with refractory epilepsy and intellectual impairment and its correlation with the degree of intellectual impairment, age, and perceived stigma.