Cultural and Practical Barriers to Epilepsy Care in Uganda (2017-2018)

Background

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?

Project Description

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?”

Anticipated Outcomes

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

Student Opportunities

We anticipate a team of 7-8 students: 2 undergraduates (pre-med, psychology or social sciences) who will conduct literature searches and collect and enter data; 2-3 master’s students (global health, clinical psychology) who will mentor undergraduates, collect data and supervise data entry; 2 medical students who will assist in formulation of medical education; and 1 postdoc (specialty in analytic methodologies) who will assist in formulation and execution of data analysis.

All team members will participate in formulation of the research project, data collection and entry, analysis approaches and dissemination of findings. Students at graduate and medical school levels will mentor undergraduates, and all students will have two defined mentors (one team lead and one additional member) who also cross discipline tracks.

Collaborative learning will be facilitated by full project team meetings (weekly) and DGNN meetings with didactic presentations, group updates and review of projects (1-2 per month). Questions will be approached in phase units, with small group assignments to master and share method components. Phase teams will have diverse learner levels and disciplines. Troubleshooter team meetings will be informal in-person or video-conferenced meetings for time-sensitive topics or challenges.

Students can expect to conduct research directly with subjects, assist directly in formulation of methodology, learn data analysis methods, contribute to publications and observe clinics (epilepsy, neuropsychology, neurosurgery).

Student evaluation will be based on rating forms for knowledge, reliability and product; grade based on literature review and manuscript participation where applicable. Mentors will be evaluated based on rating forms for knowledge, communication and accessibility.

Timing

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

Crediting

Independent study credit available for fall and spring semesters; summer funding

This Team in the News

DGHI Professor to Establish Uganda Epilepsy Centers of Excellence

Themes

Faculty/Staff Team Members

Deborah Attix, School of Medicine - Neurology, Psychiatry & Behavioral Science; DGNN*
Michael Haglund, School of Medicine - Neurosurgery; DGHI; DGNN*
Daniel Laskowitz, School of Medicine - Neurology, Neurobiology & Anesthesiology; DGNN*
Joao Vissoci, School of Medicine - Department of Emergency Medicine, DGNN

Graduate Team Members

Tony Fuller, School of Medicine - MD; DGHI; DGNN*
Robert Gramer, School of Medicine - MD

Undergraduate Team Members

Drishti Sinha, Neuroscience (AB)

Community Team Members

Paul Bangirana, Department of Psychology, Makerere University
Martin Kaddumukasa, Department of Medicine, Makerere University
Angelina Kakooza, Department of Medicine, Makerere University
Kajumba Mayanja, Department of Psychology, Makerere University

* denotes team leader

Status

Active