Cultural and Practical Barriers to Epilepsy Care in Uganda (2018-2019)
While epilepsy affects over 50 million people globally, three of four people in low-resource countries do not get care for this treatable condition. In Uganda, stigma is pervasive: one in five people believes epilepsy is contagious, and there are strong beliefs in supernatural or witchcraft-based causes, treatments and even inoculation.
In 2017-18, a Bass Connections project team began work to identify, predict and address the barriers to epilepsy care in Uganda. The team implemented a mixed-methods design to collect data examining cultural and practical barriers to reaching biomedical care. Team members designed a quantitative survey to examine the predictors of care patterns and delays, and collected focus group and interview data among all epilepsy stakeholder groups, including patients and families, traditional healers, pastoral healers, neurologists and psychiatrists.
The objective for the 2018-19 Bass Connections project team is to address the question, Given that we now know potent predictors of care-seeking behavior, how will we systematically address the barriers to epilepsy care in Uganda through well designed, culturally relevant and sensitive interventions?
This Bass Connections project team will design a multipronged intervention program with the goal of impacting the epilepsy treatment gap in Uganda. This work will occur as Duke Global Neurosurgery and Neuroscience (DGNN) continues to build the biomedical care training and access infrastructure.
The team will utilize numerous sources of data and models, including:
- Bass Connections Phase I barriers data (qualitative and modeled barriers)
- Models of epilepsy awareness program utilized in East Africa
- Community education programs for infectious disease and maternal-fetal medicine
- Models of traditional healer and biomedical care partnerships (e.g., for HIV)
- Previous research pilots in Kilifi, Kenya
The intervention will include three components: stakeholder education; access to treatment; and traditional and biomedical care partnerships. It will be implemented in a field visit in Uganda at the end of Summer 2018, with impact data collected pre- and post-implementation.
Submission of mixed methods paper; submission of papers related to specific predictors; rollout of multipronged intervention program with defined education, access and collaborative components; data for use in student analysis projects and grant submissions; presentations at global health, neurology and/or neuropsychology conferences
Summer 2018 – Summer 2019
- Summer 2018: Preparation: introductory lectures; review of Phase I models and data; development of collaborative partners and targets; begin formulation of interventions based on healthcare pattern drivers
- Fall 2018: Formulation of interventions based on healthcare pattern drivers: delineation of barrier targets and methods (e.g., through public education, Ministry of Health infrastructure, clinical routing); review of projects in DGNN for input and refinement; preparation and submission of IRB at Duke and Makerere
- Spring 2019: Systematic implementation of interventions; initiate post-implementation tracking
- Summer 2019: Complete work begun in spring and spend three weeks in Uganda for fieldwork; disseminate results (DGNN meeting; Duke Neuroscience and Psychiatry grand rounds; submission of papers for presentation at Consortium of Universities for Global Health, American Academy of Neurology annual conference, American Academy of Clinical Neuropsychology and/or International Neuropsychology Society annual meetings)
Team Outcomes to Date
Identifying Health Care Provider Needs for Epilepsy Care in Uganda (poster by Deborah Koltai Attix, Anthony Fuller, Sarah Snouse, Caleigh Smith, Olivia Ratliff, Grace Cai, presented at Bass Connections Showcase, Duke University, April 17, 2019; runner up, Bass Connections Poster Competition, Judges’ Selection)
See earlier related team, Cultural and Practical Barriers to Epilepsy Care in Uganda (2017-2018).
- Deborah Attix, School of Medicine-Neurology;Psychiatry and Behavioral Sciences
- Anthony Fuller, School of Medicine-Neurosurgery
/graduate Team Members
Sarah Snouse, Global Health - MS
/undergraduate Team Members
Grace Cai, Psychology (AB), Global Health (AB2)
Caleigh Smith, Biology (BS), Global Health (AB2)
/yfaculty/staff Team Members
Michael Haglund, Duke Global Health Institute|School of Medicine-Neurosurgery
/zcommunity Team Members
Martin Kaddumukasa, Department of Medicine, Makerere University
Mark Kaddumukasa, Department of Medicine, Makerere University
Angelina Kakooza, Department of Medicine, Makerere University