A mixed-methods, cross-sectional study of perceived stigma among Ugandans with epilepsy

ABSTRACT

Background: Epilepsy is associated with stigma and negatively impacts the lives of people living with epilepsy (PLWE) and their immediate families. More understanding of the stigma and discrimination experienced by PLWE in sub-Saharan Africa is needed. Methods: In a cross-sectional, mixed methods study, forty- eight PLWE who met the study inclusion criteria were enrolled. In depth interviews and focus group discussions were conducted and were audiotaped and transcribed verbatim. Analysis was conducted using a thematic, constant comparative approach with an emphasis on dominant themes. Perceived stigma was measured using the Kilifi epilepsy stigma score. Associations between socio-demographic factors and Kilifi epilepsy stigma score were assessed. Results: The median age of the study participants was 25 years, with median age (IQR) of epilepsy onset of 12 (6-18) years. The prevalence of high-perceived stigma was 31.9% (15/48). Seizure frequency was associated with high levels of perceived stigma (p-value of 0.038). Psychological abuse, rejections at home, places of employment and schools, poor relationships and intimacy and unmet engagements in social activities were cited as the perceived stigmatizing aspects among PLWE. Conclusion: In this Ugandan sample perceived stigma remains unacceptably high and interventions to address it are urgently needed in our settings.