Prevalence of Perceived Stigma in Patients With Epilepsy in Low Income Densely Populated Communities in Nairobi

Abstract

Background: Stigma associated with epilepsy is a global phenomenon that has a direct negative psychosocial influence on people living with epilepsy (PLWE) and indirect negative impact on public health measures instituted to combat the disease. These erode the patients’ lives and contributes to morbidity and mortality.(1) Among the different forms of stigma, perceived stigma has been found to have the greatest impact on the quality of life in PLWE. Several factors have been found to contribute to the increase in the level of perceived stigma. Despite being put on treatment to control seizures, PLWE will have to deal with stigma and its consequences unless we address it. Objectives: To determine the prevalence of perceived stigma and its associated factors in patients with epilepsy in low income densely populated communities in Nairobi. Study design: This was a descriptive cross-sectional study. Study site: Kenya Association for the Welfare of People with Epilepsy (KAWE) clinic in Huruma Lion Health Center, Riruta Health Center and Karen Health Centre. Study population: The study was conducted on individuals who are 14 years or older who are on treatment for epilepsy. Methodology: Simple random sampling method was employed to select participants. Kilifi Stigma Scale score was used to access perceived stigma. A study proforma was used to collect data. The Epilepsy Patient Knowledge Questionnaire (EPKQ) and Kilifi Epilepsy Beliefs and Attitude scale questionnaire (KEBAS) were used to examine factors associated with perceived stigma. Descriptive data was analyzed as percentages and means or medians. Logistic regression model was used to identify factors associated with perceived stigma. Results:340 patients were enrolled into the study. The mean age of study participants was 30 years with slightly more males than females. Majority had attained primary school education. Most had epilepsy for more than 10 years and on antiepileptic medication (95.6%). Poor seizure control was at 61.5%. The prevalence of perceived stigma in patients living with epilepsy was 33.2%. Difficulty in taking antiepileptic medication (AOR=4.0,95%CI 1.0-16.0), difficulty in attending follow-up clinics (AOD =4.9, 95%CI 1.0-23.0) and Injuries during seizure (AOR=2.1,95%CI 1.2-3.5) were significantly associated with perceived stigma. Conclusion. In this study, the prevalence of perceived stigma among PLWE was high. Factors significantly associated with perceived sigma were difficulty in taking antiepileptic medication, difficulty attending follow-up clinics and injuries during seizures.