Explanatory models of epilepsy: key deterrents to seeking biomedical care and effective epilepsy management in Uganda

BACKGROUND: The Sub-Saharan region has one of the largest populations with misconceptions about the etiology, manifestation, and management of epilepsy. Consequently, the majority of people living with epilepsy (PWE) receive unorthodox interventions that contribute to persistent uncontrolled seizures and poor quality of life. This study aimed to explore the prevailing explanatory models of epilepsy and their role in determining health-seeking behavior. METHODS: We utilized a qualitative, phenomenological design, with a sample of 128 participants, comprising of 19 Adolescents with Epilepsy (AWE) and 109 key-informants, including caregivers, healthcare workers, teachers, traditional and faith healers, and community leaders. RESULTS: Both PWE and community members held various beliefs about epilepsy, with a predominant pluralistic explanatory model characterized by a combination of biological, social, and supernatural assumptions. There was a high preference for supernatural remedies from traditional and/or faith healers, which seemed to be a major barrier to the uptake and adherence to biomedical care. CONCLUSION: The prevailing explanatory models might account for the observation that the PWE, including those on anti-seizure medication, often engage in non-allopathic care that can impact reaching or maintaining biomedical treatment. Effective epilepsy management requires a multi-pronged approach involving the utilization of contextually tailored epilepsy literacy programs and collaboration with traditional and faith healers to facilitate linkage to biomedical care.