Leveraging the lessons learned from studies on the cultural context of epilepsy care in Uganda: Opportunities and future directions

Angelina Kakooza-Mwesige; Mark Kaddumukasa; Deborah C Koltai; Martin N Kaddumukasa; Noeline Nakasujja; Mayanja Kajumba; Juliet Nakku; Brad J Kolls; Anthony T Fuller; Dirk E Teuwen; Michael M Haglund

doi:10.1016/j.yebeh.2020.107302

Leveraging the lessons learned from studies on the cultural context of epilepsy care in Uganda: Opportunities and future directions

Epilepsy Behav. 2021 Jan;114(Pt B):107302. doi: 10.1016/j.yebeh.2020.107302. Epub 2020 Aug 28.

Authors

Affiliations

¹ Department of Paediatrics and Child Health, Makerere University College of Health Sciences, Mulago Hill Road, P.O.Box 7072, Kampala, Uganda; Department of Paediatrics and Child Health, Mulago National Referral Hospital, Pediatric Neurology Unit, Kampala, Uganda.
² School of Medicine, College of Health Sciences, Makerere University, P.O. Box 7072, Kampala, Uganda.
³ Duke Division of Global Neurosurgery and Neurology, Department of Neurosurgery, Box 3807 Duke University Medical Center, Durham, NC 27705, USA; Duke University School of Medicine, Department of Neurology, Durham, NC, USA; Duke University School of Medicine, Department of Psychiatry and Behavioral Sciences, DUMC, Box 3119, Trent Drive, Durham, NC, USA. Electronic address: koltai@duke.edu.
⁴ School of Medicine, College of Health Sciences, Makerere University, P.O. Box 7072, Kampala, Uganda; Department of Medicine, Mulago National Referral Hospital, Neurology Unit, Kampala, Uganda.
⁵ Department of Psychiatry, School of Medicine, Makerere University College of Health Sciences, P.O. Box 7072, Kampala, Uganda.
⁶ Department of Mental Health and Community Psychology, Makerere University School of Psychology, P.O. Box 7062, Kampala, Uganda.
⁷ Butabika National Referral Mental Hospital, P.O. Box 7017, Kampala, Uganda.
⁸ Duke Division of Global Neurosurgery and Neurology, Department of Neurosurgery, Box 3807 Duke University Medical Center, Durham, NC 27705, USA; Duke University School of Medicine, Department of Neurology, Durham, NC, USA; Duke Clinical Research Institute, Neuroscience Medicine, 300 W Morgan St, Durham, NC 27701, USA.
⁹ Duke Division of Global Neurosurgery and Neurology, Department of Neurosurgery, Box 3807 Duke University Medical Center, Durham, NC 27705, USA; Duke Global Health Institute, 310 Trent Dr, Durham, NC 27710, USA; Duke University, School of Medicine, Durham, NC, USA.
¹⁰ UCB, Allée de la recherche 60, 1070 Brussels, Belgium.

PMID: 32868221
DOI: 10.1016/j.yebeh.2020.107302

Abstract

In this summary paper, we review the body of research contained in this special issue, The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda, and corollary recommendations for a way forward. We review key findings and conclusions for the studies, which tell a story of culture and care-seeking through discussions and data gleaned from a rich research landscape traversing community village dwellings, shared communal areas, churches, and urban hospitals. The voices and perspectives of over 16,000 study participants inclusive of people living with epilepsy, their neighbors and healthcare workers, traditional healers, and faith leaders are reported. From this, we synthesize findings and prioritize a set of recommendations to advance epilepsy care in Uganda. Progress will require infrastructure strengthening, multilevel educational investments, and an ambitious, extensive program of community sensitization. These proposed priorities and actions outline a way forward through formidable but surmountable challenges but require harmonized efforts by government and other relevant stakeholders, scholars, clinicians, and community leaders. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".

Keywords: Culture; Epilepsy; Infrastructure; Sensitization; Uganda.

Publication types

Research Support, Non-U.S. Gov't
Review

MeSH terms

Epilepsy* / therapy
Humans
Patient Acceptance of Health Care
Uganda