Epilepsy-associated levels of perceived stigma: a study in Ecuador.
Résumé
Objective: To measure perceived stigma in urban and rural areas of a developing country.
Background: Epilepsy is felt to be a stigmatizing condition. Stigma has been considered one of the major factors contributing to the burden of epilepsy and to the treatment gap. Stigma has a negative effect on the management of people with epilepsy (PWE). Furthermore, lack of information and inappropriate beliefs are still the factors that most contribute to the stigma and discrimination.
Design/Methods: A cross-sectional study in urban and rural areas in Ecuador was undertaken. People with a confirmed diagnosis of epilepsy were included. The survey was implemented through a questionnaire to determine perceived stigma and evaluate the factors associated. The perceived stigma was measured using revised Jacoby’s stigma scale to detect differences in levels of stigmatization. Access to treatment was evaluated through documentation of use of AEDs and access to medical care.
Results: A total of 243 PWE were interviewed, 65.8% reported feeling stigmatized and 39.1% reported a high stigmatization level. We found a significant difference in high stigma perception in the urban area compared to the rural area (57 (60%) vs 38 (40%), p<0.0001). No significant correlation was found between use of AEDs and the levels of perceived stigma. Additionally, PWE who did no talk about their condition and those who did not feel well informed about their epilepsy had significantly higher perceived stigma levels.
Conclusions: The stigma perception was relevant in all PWE. We found a higher stigma level perception in the urban area compared to the rural area. Our study points out the correlation between PWE who did not feel well informed about their epilepsy and high stigmatization.