Epilepsy affects 69 million people globally, with disproportionate prevalence in low- and middle-income countries. There is an immense treatment gap, with fewer than three out of four people with epilepsy receiving care despite the fact that symptoms can be ameliorated with medication in 70 percent of cases. 

In Uganda, many people believe in a plurality of potential causes for epilepsy, with over two-thirds endorsing demonic possession, witchcraft and ancestral determinism as likely causes. These beliefs are a primary determinant of seeking traditional and pastoral healers, which then delays reaching biomedical care for an average of two years. Collectively, these community perspectives can be used to justify isolation of people with epilepsy, drive harsh stigmatization and encumber care-seeking pathways. 

This team worked to develop community engagement interventions to increase epilepsy health literacy in Mbarara, Uganda in an effort to help people with epilepsy reach biomedical care. After conducting a systematic review of all epilepsy community engagement studies conducted in Africa to consider successful approaches, team members partnered with adolescents and families with epilepsy as well as influential community leaders to design intervention strategies. These research partnerships yielded culturally relevant epilepsy health literacy engagement projects that leveraged widely used communication mediums, such as theater, social media and radio.

Community Engagement to Impact Epilepsy Health Literacy in Uganda

Poster by Pratamesh Ramasubramanian, Isha Shah, Langley Barnes, Paula Njeru, Izzy Andrews, Neil Prose and Deborah Koltai