Community Engagement to Impact Epilepsy Health Literacy in Uganda (2021-2022)

Background

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 in 70 percent of cases with medication. 

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, in addition to biologic etiologies. Critically, 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 justify isolation of people with epilepsy, drive harsh stigmatization and encumber care-seeking pathways. An important step to impact the treatment gap is to improve community epilepsy health literacy, with a focus on the beliefs and misconceptions that drive stigma and deter people from reaching biomedical care.

Project Description

In 2020-2021, this Bass Connections team’s work demonstrated a pervasive belief of epilepsy as a contagion permeating the community, and that the basic rights of people with epilepsy, such as education and marriage, should be limited. 

Building on this work, the 2021-2022 team aims to develop a community engagement project to increase epilepsy health literacy and improve community awareness of epilepsy as a treatable medical illness to help facilitate people with epilepsy reaching biomedical care. 

Team members will create community engagement projects in partnership with adolescents and families with epilepsy and influential community leaders. The team will design and pilot one or two epilepsy health literacy engagement projects that leverage widely used communication mediums, such as theatre, social media and radio, in Mbarara, Uganda. 

Team members will design sensitization routes and program components including epilepsy as a noninfectious treatable medical illness, symptoms of epilepsy and referral routes to known points of care. The team will use a pre- and post- comparison of community members’ scores on the Attitudes and Beliefs About Living with Epilepsy scale to assess the program’s impact of advocacy involvement. 

Anticipated Outputs

Posters; manuscripts; didactic presentations

Student Opportunities

Ideally, this team will include 2 graduate students in global health or medicine and 4 undergraduate students from premedical, global health, social sciences or public health backgrounds. Interested students should exhibit curiosity, humility, creativity and persistence toward collaborating on an interdisciplinary and diverse team.

Students will have the opportunity to conduct directed literature searches about community education and engagement projects and will learn program and research development in a cultural context. Students will be involved in the data collection, analysis and contribute to presentations and publications. If they have clinical interest, they will be able to observe clinics relevant to the project (e.g., epilepsy, neuropsychology, neurosurgery, pediatrics). 

The team will meet weekly (virtually as needed) for formulation, task identification and progress updates. 

Timing

Summer 2021 – Summer 2022

  • Summer 2021 (optional): Literature reviews 
  • Fall 2021: Community engagement partnership; development of pilot programs
  • Spring 2022: Implementation of programs
  • Summer 2022 (optional): Analysis of pre- and post- outcomes; draft papers for publication

Crediting

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

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

Tony Fuller and his healthcare colleagues at the opening of Western Uganda’s first epilepsy clinic.

Team Leaders

  • Deborah Koltai, School of Medicine-Psychiatry and Behavioral Sciences
  • Neil Prose, School of Medicine-Dermatology

/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

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