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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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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
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author Irani, Julia
Rujumba, Joseph
Mwaka, Amos Deogratius
Arach, Jesca
Lanyuru, Denis
Idro, Richard
Colebunders, Robert
Gerrets, René
Peeters Grietens, Koen
O’Neill, Sarah
author_facet Irani, Julia
Rujumba, Joseph
Mwaka, Amos Deogratius
Arach, Jesca
Lanyuru, Denis
Idro, Richard
Colebunders, Robert
Gerrets, René
Peeters Grietens, Koen
O’Neill, Sarah
author_sort Irani, Julia
collection PubMed
description 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.
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spelling pubmed-94116902022-08-27 ‘There Were Moments We Wished She Could Just Die’: The Highly Gendered Burden of Nodding Syndrome in Northern Uganda Irani, Julia Rujumba, Joseph Mwaka, Amos Deogratius Arach, Jesca Lanyuru, Denis Idro, Richard Colebunders, Robert Gerrets, René Peeters Grietens, Koen O’Neill, Sarah Qual Health Res Research Articles 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. SAGE Publications 2022-05-13 2022-08 /pmc/articles/PMC9411690/ /pubmed/35549600 http://dx.doi.org/10.1177/10497323221085941 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by-nc/4.0/This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Research Articles
Irani, Julia
Rujumba, Joseph
Mwaka, Amos Deogratius
Arach, Jesca
Lanyuru, Denis
Idro, Richard
Colebunders, Robert
Gerrets, René
Peeters Grietens, Koen
O’Neill, Sarah
‘There Were Moments We Wished She Could Just Die’: The Highly Gendered Burden of Nodding Syndrome in Northern Uganda
title ‘There Were Moments We Wished She Could Just Die’: The Highly Gendered Burden of Nodding Syndrome in Northern Uganda
title_full ‘There Were Moments We Wished She Could Just Die’: The Highly Gendered Burden of Nodding Syndrome in Northern Uganda
title_fullStr ‘There Were Moments We Wished She Could Just Die’: The Highly Gendered Burden of Nodding Syndrome in Northern Uganda
title_full_unstemmed ‘There Were Moments We Wished She Could Just Die’: The Highly Gendered Burden of Nodding Syndrome in Northern Uganda
title_short ‘There Were Moments We Wished She Could Just Die’: The Highly Gendered Burden of Nodding Syndrome in Northern Uganda
title_sort ‘there were moments we wished she could just die’: the highly gendered burden of nodding syndrome in northern uganda
topic Research Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9411690/
https://www.ncbi.nlm.nih.gov/pubmed/35549600
http://dx.doi.org/10.1177/10497323221085941
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