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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...
Autores principales: | , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
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SAGE Publications
2022
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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. |
format | Online Article Text |
id | pubmed-9411690 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | SAGE Publications |
record_format | MEDLINE/PubMed |
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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