Community Knowledge, Self-Reported Prevalence, and Management of Epilepsy in Lira District: A Descriptive Cross-Sectional Study.

Abstract

Background: Epilepsy is a chronic neurological disorder characterized by spontaneous, recurrent seizures affecting over 70 million individuals worldwide, irrespective of age, gender, or location. The burden is poorly documented in rural communities in Sub-Saharan Africa. People with epilepsy face social stigma, discrimination, and overall productivity losses. This study investigated self-reported prevalence, community knowledge, and the management approaches of epilepsy in Lira district, Uganda.

Methods: A descriptive cross-sectional community -based study was conducted across the ten sub-counties of Lira District, employing random sampling among 400 adults, one per household. Data were collected using a pre-tested, interviewer-administered questionnaire translated into the local language (Leb Lango). Data was analyzed using SPSS v26, employing descriptive statistics (frequencies and percentages) and presented in form of tables and figures.

Results: The majority (81%) of the 400 participants described epilepsy as a disease of sudden falling. 51.7% attributed it to severe malaria, and overthinking. While 54.8% reported having a close family member with epilepsy, the self-reported prevalence of the actual cases of epilepsy observed during the study was 25/400 (6.25%). Study participants reported symptoms such as black outs and sudden falls (91.8%) as well as convulsions (86.3%). Epilepsy onset was predominantly reported in childhood (42.5%). Most attacks occurred at no specific time (40.5%) or during moonrise/moonset (32.5%). 75% of respondents reported warning signs including dizziness (78.3%), palpitations (72.5%), and blurred vision (64.5%). Approximately 35% of families sought help from a hospital or herbalist, and 80% reported no improvement.

Conclusion: This study documents a high self-reported prevalence and poor community management for epilepsy in Lira district. Community-based self-reports, rather than clinically verified findings, highlight the need for validated community screening programs, training of community health workers, strengthening of referral pathways, and supporting clinically validated prevalence studies.