Citation

Irani J, Rujumba J, Mwaka AD, Arach J, Lanyuru D, Idro R, Colebunders R, Gerrets R, Peeters Grietens K, O'Neill S. Qual. Health Res. 2022; ePub(ePub): ePub.

Copyright

(Copyright © 2022, SAGE Publishing)

DOI

10.1177/10497323221085941

PMID

35549600

Abstract

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.

Language: en

Keywords

disability; gender; sexual violence; Uganda; epilepsy; care-giving; nodding syndrome; onchocerciasis; stigma