Perceived stigma and associated factors among children and adolescents with epilepsy in south western Uganda: A cross sectional study

PURPOSE: To determine the prevalence of perceived stigma and its associated factors among children and adolescents with epilepsy in southwestern Uganda. METHODS: We conducted a cross sectional study at a large referral hospital and a small rural health facility in Mbarara district, southwestern Uganda. Participants were aged 6-18 years being managed for epilepsy for at least 3 months, with no medical emergencies. Perceived stigma was measured using the Kilifi Stigma Scale of Epilepsy. Data on associated factors were collected by a pre-piloted investigator designed questionnaire. Logistic regression was used to determine associated factors considering 5% statistical significance. RESULTS: Prevalence of high perceived stigma was 34% with higher levels among older children and adolescents. Children who had never attended school were more likely to report perceived stigma (62%). Factors associated with this stigma included having epilepsy related injuries or deformities (p = 0.022), other chronic illnesses (p = 0.009) and a longer duration of antiepileptic drug use (p = 0.004). CONCLUSIONS: Perceived stigma of epilepsy remains a major public health problem among children and adolescents and it is highly associated with preventable or modifiable factors. Therefore, there is need to design interventions that can address these factors in order to reduce the stigma and its potential future complications such as educational inequalities.