Stigma and epilepsy in onchocerciasis-endemic regions in Africa: a review and recommendations from the onchocerciasis-associated epilepsy working group

Infectious Diseases of Poverty

Robert Colebunders¹  Joseph Nelson Siewe Fodjo¹  Housseini Dolo¹  Maya Ronse²  Julia Irani²  Alfred K. Njamnshi³  Sarah O’Neill⁴  Catherine Abbo⁵  Augustine Mugarura⁶  Yasuaki Sato⁷  Denis Nono⁸ 

[1] 0000 0001 0790 3681, grid.5284.b, Global Health Institute, University of Antwerp, Antwerp, Belgium;0000 0001 2153 5088, grid.11505.30, Department of Public health, Institute of Tropical Medicine, Antwerp, Belgium;0000 0001 2173 8504, grid.412661.6, Department of Neurology, Yaoundé Central Hospital/FMBS, The University of Yaoundé I, Brain Research Africa Initiative (BRAIN), Yaoundé, Cameroon;0000 0001 2348 0746, grid.4989.c, CRISS – School of Public Health, Université Libre de Bruxelles and LAMC Faculté de Philosophie et de Sciences Sociales Université Libre de Bruxelles, Brussels, Belgium;0000 0004 0620 0548, grid.11194.3c, Department of Psychiatry, Makerere University, Kampala, Uganda;Epilepsy Support Association of Uganda, Wakiso, Uganda;grid.440924.f, Department of Environmental Science and Technology, Osaka Sangyo University, Osaka, Japan;grid.442626.0, Department of Mental Health, Austrian Partnership Programme in Higher Education and Research for Development (APPEAR) Project & AVSI Foundation, Gulu University, Gulu, Uganda;

关键词: Epilepsy;    Onchocerciasis;    Stigma;    Anti-epileptic treatment;    Nodding syndrome;    Discrimination;    Misconception;    Africa;   

DOI  :  10.1186/s40249-019-0544-6

来源: publisher

【 摘 要 】

BackgroundIn onchocerciasis-endemic areas, particularly in those with a sub-optimal onchocerciasis control programme, a high prevalence of epilepsy is observed. Both onchocerciasis and epilepsy are stigmatizing conditions. The first international workshop on onchocerciasis-associated epilepsy (OAE) was held in Antwerp, Belgium (12–14 October 2017) and during this meeting, an OAE alliance was established. In this paper, we review what is known about epilepsy-associated stigma in onchocerciasis-endemic regions, and present the recommendations of the OAE alliance working group on stigma.Main bodyFor this scoping review, literature searches were performed on the electronic databases PubMed, Scopus and Science Direct using the search terms “epilepsy AND onchocerciasis AND stigma”. Hand searches were also undertaken using Google Scholar, and in total seven papers were identified that addressed epilepsy-related stigma in an onchocercisasis-endemic area. Due to the limited number of published research papers on epilepsy-associated stigma in onchocerciasis-endemic areas, other relevant literature that describes important aspects related to stigma is discussed. The thematic presentation of this scoping review follows key insights on the barriers to alleviating the social consequences of stigma in highly affected onchocerciasis-endemic areas, which were established by experts during the working group on stigma and discrimination at the first international workshop on OAE. These themes are: knowledge gaps, perceived disease aetiology, access to education, marriage restrictions, psycho-social well-being, burden on the care-giver and treatment seeking behaviour. Based on the literature and expert discussions during the OAE working group on stigma, this paper describes important issues regarding epilepsy-related stigma in onchocerciasis-endemic regions and recommends interventions that are needed to reduce stigma and discrimination for the improvement of the psycho-social well-being of persons with epilepsy.ConclusionsEducating healthcare workers and communities about OAE, strengthening onchocerciasis elimination programs, decreasing the anti-epileptic treatment gap, improving the care of epilepsy-related injuries, and prioritising epilepsy research is the way forward to decreasing the stigma associated with epilepsy in onchocerciasis-endemic regions.

【 授权许可】

CC BY