The individual with epilepsy: perceptions about the disease and implications on quality of life

Christiane del Claro Hopker Ana Paula Berberian Gisele Massi Mariluci Hautsch Willig Rita Tonocchi About the authors

ABSTRACT

Purpose

The present study aims to analyze the perceptions of individuals with epilepsy about the disease and its impact in their quality of life (QoL).

Methods

This is a cross-sectional, qualitative and quantitative study conducted in a tertiary referral hospital associated with the Brazilian National Health System (SUS). Data were collected from 30 individuals with diagnosis of refractory temporal lobe epilepsy (RTLE). The study participants responded to a questionnaire to collect sociodemographic and clinical data, as well as their perceptions about the disease. QoL was assessed by the Subjective Handicap of Epilepsy (SHE) and the Stigma Scale of Epilepsy (SSE).

Results

Significant correlation was found between stigma and quality of life and the work and activity and social and personal life domains, as well as between stigma and perceptions about epilepsy. The responses provided by the participants were organized into four categories: definitions and causes, seizures and treatment, family and social impacts, and impact on individuals’ lives.

Conclusion

The results show that participants have limited knowledge about epilepsy and that there is a negative impact caused by the stigma related to this disease on their QoL. It was possible to verify that QoL and stigma are directly related to the understanding of participants about epilepsy. Therefore, it is important to implement programs and actions that aim to provide patients and their families with more comprehensive knowledge about epilepsy; promote communication between health professionals and patients; and encourage the participation of patients and their families during treatment.

Keywords
Epilepsy; Knowledge; Empowerment; Quality of Life; Social Stigma

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