03567nas a2200361   4500000000100000008004100001260004400042653002400086653005700110653002100167653001300188653001900201653001800220653003000238653002100268100001600289700001200305700001900317700001100336700001100347700001100358700001500369700001100384700001200395700001600407700001800423245015600441856010300597300000900700490000600709520247600715022001403191       2019                            d  bSpringer Science and Business Media LLC10aInfectious Diseases10aPublic Health, Environmental and Occupational Health10aGeneral Medicine10aEpilepsy10aonchocerciasis10aSocial Stigma10a Anti-epileptic treatment10aNodding syndrome1 aO’Neill S1 aIrani J1 aSiewe Fodjo JN1 aNono D1 aAbbo C1 aSato Y1 aMugarura A1 aDolo H1 aRonse M1 aNjamnshi AK1 aColebunders R00aStigma and epilepsy in onchocerciasis-endemic regions in Africa: a review and recommendations from the onchocerciasis-associated epilepsy working group  uhttps://idpjournal.biomedcentral.com/counter/pdf/10.1186/s40249-019-0544-6.pdf?pdf=button%20sticky  a1-110 v83 a<p><strong>Background:</strong> In 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.</p>

<p><strong>Main body:</strong> For 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.</p>

<p><strong>Conclusions:</strong> Educating 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</p>
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