The impact of an Epilepsy Community Health Worker Program on caregivers of children with epilepsy and community members in rural Zambia

Objectives: Improving the epilepsy treatment gap in sub-Saharan Africa requires addressing stigma around knowledge, attitudes and perceptions of epilepsy. Our study investigated the impact of an epilepsy community health worker (CHW) program on caregivers of children with epilepsy and community members in rural Zambia. Methods: An epilepsy CHW program was implemented at Neri Clinic, located outside of Lusaka, Zambia. Pre- and post-intervention focus groups were conducted with community members, and pre- and post-intervention questionnaires were administered to caregivers of children with epilepsy. Results: Pre-intervention, 11 community members participated in focus groups and 40 caregivers of children with epilepsy completed questionnaires on perceptions of epilepsy. Caregivers espoused more acceptance of people with epilepsy functioning in society as compared to community members; epilepsy was not seen as a contagious disease in both groups, and management of seizure first aid was a significant pervasive knowledge gap. 10 CHWs were trained through a train-the-trainer model, and completed bi-weekly visits to 40 families enrolled in the program. CHWs learned and retained knowledge regarding epilepsy based on interval assessments and refresher training. At 1 year, caregivers of children with epilepsy demonstrated improved knowledge but community focus groups still displayed significant knowledge gaps. Conclusion: This study demonstrates the feasibility and value of implementing an epilepsy CHW program in rural Zambia, and that this can improve caregiver knowledge, attitudes and perceptions of epilepsy. However, this brief intervention alone is not sufficient to improve community perceptions and additional parallel community educational programs may be needed.
Keywords: Epilepsy, Community Health Worker, Education