Cultural and Practical Barriers to Epilepsy Care in Uganda (2018-2019)

Background

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?

Project Description

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.

Anticipated Outcomes

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

Student Opportunities

Students can expect to conduct research directly with study participants, assist in formulation of methodology, learn data analysis methods, contribute to publications and observe epilepsy, neuropsychology and/or neurosurgery clinics. Students will assist in the formulation of intervention components during Summer Session II, and will have the opportunity for field implementation prior to Fall classes in the 2018-19 academic year.

The ideal composition of the team will include 2 undergraduate students (pre-med, global health, social sciences) who will conduct literature searches and collect and enter data; 1-2 master’s students (global health) who will mentor undergraduates, collect data and supervise data entry (RA funding available); and 1 medical student who will assist in formulation of medical education. All team members will formulate and execute interventions; collect, enter and analyze data; and disseminate findings. Erin Delionbach will serve as project manager.

Team evaluation will be based on weekly review of project goals. Grades will be based on project participation, literature review and manuscript participation where applicable. Mentor evaluation will use rating forms for knowledge, communication and accessibility.

Duke undergraduates and graduate students can apply for this project team beginning on January 24. The priority deadline is February 16 at 5:00 p.m.

Timing

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)

Crediting

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

See earlier related team, Cultural and Practical Barriers to Epilepsy Care in Uganda (2017-2018).

Themes

Faculty/Staff Team Members

Deborah Attix, School of Medicine-Medicine: Neurology*
Anthony Fuller, School of Medicine-Surgery: Neurosurgery
Michael Haglund, School of Medicine-Surgery: Neurosurgery|Duke Global Health Institute
Joao Vissoci, School of Medicine-Surgery: Emergency Medicine

Community Team Members

Martin Kaddumukasa, Department of Medicine, Makerere University
Mark Kaddumukasa, Department of Medicine, Makerere University
Kajumba Mayanja, Department of Psychology, Makerere University

* denotes team leader

Status

Active, New