Evaluation of social inclusion in Brazilian adult women with epilepsy: Perception of stigma and quality of life

Abstract

Epilepsy is a chronic disease characterized by recurrent epileptic seizures that can affect the perception of stigma and compromise the quality of life of those living with it. In addition, sociodemographic factors such as employment and maintaining a job, education, and the autonomy to drive vehicles are often impaired. ObjectiveTo assess the social inclusion of adult women with epilepsy in relation to the perception of stigma and quality of life, and the clinical aspects of the disease. MethodologyData from 70 adult Brazilian women with epilepsy regarding aspects related to their social inclusion were verified. Such data were linked to clinical aspects and scores from the questionnaires: Quality of Life in Epilepsy Inventory 31 (QOLIE-31) and the Epilepsy Stigma Scale (ESS), with a significance level of p < 0.05. ResultsAverage age of 45.5 years, 40 (57.1 %) women were divorced/single/widowed, 31 (44.3 %) women had less than 10 years of formal education, 32 (45.7 %) women had no income, and 57 (81.4 %) did not have a driver's license. The age at the time of the first seizure was 18 years, the seizures were focal in 46 (65.7 %) cases, and 26 (37.1 %) cases were seizure-free in the last year. A high number of women reported that the diagnosis of epilepsy negatively influenced aspects of autonomy such as the possession of a driver's license and going out alone. Longer duration of epilepsy was associated with lower education, not having children, and lower scores on the QOLIE-31. Higher scores on the QOLIE-31 were correlated with lower frequency of seizures and with the age at the time of the first seizure. Values in the dimension − energy and fatigue of the QOLIE-31 were significantly lower in the group with less independence compared to the other two groups with more independence, in latent class analyses (ANOVA, adjusted for age 42.1 ± 35.6 vs 57.2 ± 28.4 vs 73.9 ± 23.8, p = 0.0295). DiscussionClinical aspects of epilepsy and having a partner, autonomy, and independence such as driving vehicles are factors that contribute to social inclusion and to the perception of a better quality of life for adult women with epilepsy. ConclusionIt was observed that having a partner, autonomy, and independence such as driving vehicles are factors that contribute to social inclusion and to the perception of a better quality of life for adult women with epilepsy.