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‘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
Authors: Irani, J.; Rujumba, J.; Mwaka, A.D.; Arach, J.; Lanyuru, D.; Idro, R.; Colebunders, R.; Gerrets, R.; Peeters Grietens, K.; O’Neill, S.
Source: Irani, J, Rujumba, J, Mwaka, A D, Arach, J, Lanyuru, D, Idro, R, Colebunders, R, Gerrets, R, Peeters Grietens, K & O’Neill, S 2022, '‘There Were Moments We Wished She Could Just Die’ : The Highly Gendered Burden of Nodding Syndrome in Northern Uganda', Qualitative Health Research, vol. 32, no. 10, pp. 1544-1556. https://doi.org/10.1177/10497323221085941
Publication Year: 2022
Collection: Universiteit van Amsterdam: Digital Academic Repository (UvA DARE)
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.
Document Type: article in journal/newspaper
File Description: application/pdf
Language: English
ISSN: 1049-7323
Relation: info:eu-repo/semantics/altIdentifier/pmid/35549600; info:eu-repo/semantics/altIdentifier/hdl/https://hdl.handle.net/11245.1/0ec23720-f9b1-4c78-a879-1176b5e7169c; info:eu-repo/semantics/altIdentifier/pissn/1049-7323
DOI: 10.1177/10497323221085941
Availability: https://dare.uva.nl/personal/pure/en/publications/there-were-moments-we-wished-she-could-just-die(0ec23720-f9b1-4c78-a879-1176b5e7169c).html; https://doi.org/10.1177/10497323221085941; https://hdl.handle.net/11245.1/0ec23720-f9b1-4c78-a879-1176b5e7169c; https://pure.uva.nl/ws/files/128263455/irani_et_al_2022_there_were_moments_we_wished_she_could_just_die_the_highly_gendered_burden_of_nodding_syndrome_in.pdf
Rights: info:eu-repo/semantics/openAccess ; http://creativecommons.org/licenses/by-nc/4.0/
Accession Number: edsbas.79F02BCD
Database: BASE