Cultural and Practical Barriers to Epilepsy Care in Uganda (2017-2018)
Epilepsy is one of the most common neurological disorders in world, affecting over 50 million people. While it is highly treatable, three of four people in low-resource countries do not get care.
There is significant misinformation and stigma about epilepsy in Uganda, with almost one in five people believing it is contagious. Less than a third of people know how to respond to a person having seizures. Supernatural or spiritual attributions for illness and the use of traditional healers employing herbal or spiritual interventions also exert influence on care seeking and provision.
Duke’s Division of Global Neurosurgery and Neuroscience (DGNN) has received grant funding to expand its focus in Uganda to develop an Epilepsy Center of Excellence. The potential impact of the center is immense, as epilepsy in Uganda is critically under-diagnosed and management is under-resourced. In preparation for launching this major initiative, scouting research has identified cultural and practical challenges to the implementation of this clinical program. This is the problem to be addressed by the Bass Connections project team: How can we identify, quantify, predict and address the barriers to epilepsy care in Uganda?
There are multiple factors adversely impacting epilepsy care in Uganda. These challenges to the successful implementation of the clinical center include the cost of medical diagnosis and management, cost of brand medicines, counterfeit generic medicines, transportation to care, limited neurology capacity, use of traditional healers and belief in epilepsy as a contagious or supernaturally induced condition.
A survey at DGGN’s 2016 neurosurgical camp in Uganda showed that patients are receptive and openly discuss belief systems with local study personnel; Western and traditional symptom attributions often coexist; rural versus urban setting did not predict Western versus traditional attributions in the sample; and while education did not predict belief in supernatural attributions, it did influence interpretation of the potential effect of insufficient schooling, medication and surgery.
The objective for this Bass Connections project team to deliberate and resolve is “How can we identify, quantify, predict and address the barriers to epilepsy care in Uganda?”
Submission of manuscript outlining the relative barriers to epilepsy care in Uganda and proposing interventions targeting the principal barriers; development of infrastructure relations that will facilitate interventions; data for use in student analysis projects and grant submissions; presentation at annual global health, neurology and neuropsychology conferences
Summer 2017 – Spring 2018
- Summer 2017: Introductory lectures; review of pilot data; review of collaborative partners and targets; formulation of research methodology; identification and delineation of epilepsy care barriers; review of projects in DGNN for input and refinement; preparation and submission of IRB at Duke Medical Center and Makerere University, Uganda
- Fall 2017: Survey; data analysis; analysis of barriers; development of intervention pathways
- Spring 2018: Presentation to DGNN meeting; presentation at Duke Neuroscience and Psychiatry Grand Rounds; submission of papers for presentation at Consortium of Universities for Global Health, American Academy of Neurology, American Academy of Clinical Neuropsychology and/or International Neuropsychology Society annual meetings
Team Outcomes to Date
Barriers to Biomedical Care, Beliefs about Epilepsy, and Care Seeking in Uganda: A Quantitative Approach (Deborah Koltai Attix, Payal Chakraborty, Nadine Sanchez, Alex Gualtieri, Drishti Sinha, Sam Bobholz, Erica Onuoha, Joao Vissoci, Mark Kaddumukassa, Kajumba Mayanja, Tony Fuller, Juma Kalyegira, Michael Haglund), presented at Bass Connections Showcase, April 18, 2018
Understanding the Barriers and Potential Solutions to Epilepsy Care in Uganda: A Qualitative Study (Nadine Sanchez, Deborah Koltai Attix, Kajumba Mayanja, Alex Gualtieri, Payal Chakraborty, Drishti Sinha, Juma Kalyegira, Erica Onuoha, Sam Bobholz, Michael Haglund), presented at Bass Connections Showcase, April 18, 2018
Elucidating Delay to Biomedical Care for Epilepsy Patients in Uganda: Traditional Healers as the First Line of Care (poster by Deborah Attix, Kajumba Mayanja, Nadine Sanchez, Alex Gualtieri, Payal Chakraborty, Drishti Sinha, Juma Kalygira, Sam Bobholz, Erica Onuoha, Diana Waters, Sandra Batakana, Michael Haglund), presented at Global Health Research Showcase, November 1, 2017
Addressing Cultural and Practical Barriers to Epilepsy Care in Uganda: A Mixed Methods Study (poster by Nadine Sanchez), presented at Global Health Research Showcase, November 1, 2017
Characterizing Epilepsy Treatment and Patient Outcomes in Uganda: A Hospital-based Prospective Cohort Study (poster by Payal Chakraborty), presented at Global Health Research Showcase, November 1, 2017
This Team in the News
See related team Cultural and Practical Barriers to Epilepsy Care in Uganda (2018-2019).
/faculty/staff Team Members
Deborah Attix, School of Medicine-Psychiatry and Behavioral Sciences;Medicine: Neurology*
Michael Haglund, Duke Global Health Institute|School of Medicine-Surgery: Neurosurgery*
Joao Vissoci, School of Medicine-Surgery: Emergency Medicine
/graduate Team Members
Payal Chakraborty, Global Health - MS
Tony Fuller, Medicine-MD
Nadine Sanchez, Global Health - MS
/undergraduate Team Members
Erica Onuoha, Biology (BS)
Drishti Sinha, Neuroscience (AB)
/zcommunity Team Members
Mark Kaddumukasa, Department of Medicine, Makerere University
Martin Kaddumukasa, Department of Medicine, Makerere University
Kajumba Mayanja, Department of Psychology, Makerere University