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‘There Were Moments We Wished She Could Just Die’: The Highly Gendered Burden of Nodding Syndrome in Northern Uganda

Nodding Syndrome (NS) occurs within a wide spectrum of epilepsies seen in onchocerciasis endemic areas of sub-Saharan Africa. It has debilitating consequences on affected individuals and increases the socio-economic, physical and psychological burden on care-givers and their households, diminishing...

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Detalles Bibliográficos
Autores principales: Irani, Julia, Rujumba, Joseph, Mwaka, Amos Deogratius, Arach, Jesca, Lanyuru, Denis, Idro, Richard, Colebunders, Robert, Gerrets, René, Peeters Grietens, Koen, O’Neill, Sarah
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9411690/
https://www.ncbi.nlm.nih.gov/pubmed/35549600
http://dx.doi.org/10.1177/10497323221085941
Descripción
Sumario:Nodding Syndrome (NS) occurs within a wide spectrum of epilepsies seen in onchocerciasis endemic areas of sub-Saharan Africa. It has debilitating consequences on affected individuals and increases the socio-economic, physical and psychological burden on care-givers and their households, diminishing their standing within the community. Social science research on the disproportionate burden of the disease on females is limited. Based on ethnographic research over 3 years in northern Uganda, we explored the burden of being ill and care-giving for persons with NS from a gendered perspective. We found that NS-affected females were at greater risk of physical and psychological abuse, sexual violence, unwanted pregnancies, sexually transmitted infections and stigma, in a context of deteriorating socio-economic conditions. Primary care-givers of the NS-affected, mostly women, struggled to make ends meet and were subjected to stigma and abandonment. Targeted interventions, including legal protection for affected females, stigma reduction, and psycho-social and financial support are needed.