Community Engagement to Impact Epilepsy Health Literacy in Uganda (2021-2022)
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.
Building off of the work of previous teams, this team designed, piloted and refined an epilepsy education program for frontline (nonspecialized) healthcare workers. Beginning with the World Health Organization’s “mhGAP Intervention Guide 2.0” (a tool to scale up services for people with mental, neurological and substance use disorders), team members engaged Duke and Ugandan epilepsy care specialists to update mhGAP and add sections that would enhance its effectiveness and cultural relevance. This resulted in updates to the prescribing rubrics, the addition of a section on epilepsy subtypes that drive medication management and the development of a section on patient-provider communication.
The Ugandan Ministry of Health reviewed the program and adopted it for rollout into its national epilepsy training program. The new “ADEPT training program: Advanced Delivery of EPilpesy Treatment” was then taught at four sites, administered by the Ministry of Health of Uganda.
Team members developed two manuscripts reflecting this work, which are currently under review, including one that documents significant gains in epilepsy knowledge as a result of training and one that reflects the unique contents and process of the communication module.
Going forward, team members will explore the perspectives of adolescents with epilepsy in Uganda to inform the development of a community healthcare literacy program.
Summer 2021 – Summer 2022
Building Partnerships in Uganda to Promote Epilepsy Care (2022 Fortin Foundation Bass Connections Virtual Showcase)
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, presented at Fortin Foundation Bass Connections Showcase, Duke University, April 13, 2022)
This Team in the News
See earlier related team, Healthcare Provider Education to Reduce Epilepsy Care Disparities in Uganda (2020-2021).
Image: Tony Fuller (back row, fifth from the left) and his healthcare colleagues at the opening of Western Uganda’s first epilepsy clinic in Mbarara, courtesy of Tony Fuller
- Deborah Koltai, School of Medicine-Psychiatry and Behavioral Sciences;Neurology
- Neil Prose, School of Medicine-Dermatology
/undergraduate Team Members
Isabelle Andrews, Psychology (AB)
Langley Barnes, Neuroscience (BS)
Pratamesh Ramasubramanian, Biology (BS)
Isha Shah, Program II (BS)
/yfaculty/staff Team Members
Anthony Fuller, School of Medicine-Neurosurgery
Michael Haglund, Duke Global Health Institute|School of Medicine-Neurosurgery
/zcommunity Team Members
Purple Bench Initiative - Uganda
Epilepsy Support Association Uganda
Martin Kaddumukasa, Department of Medicine, Makerere University
Mayanja Kajumba, Makerere University - Uganda
Angelina Kakooza, Department of Medicine, Makerere University
Colby Newson, Medical Student, University of Virginia