Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2022 Aug;32(10):1544-1556.
doi: 10.1177/10497323221085941. Epub 2022 May 13.

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

Julia Irani  1 , Joseph Rujumba  2 , Amos Deogratius Mwaka  3   4 , Jesca Arach  3 , Denis Lanyuru  3 , Richard Idro  2   4 , Robert Colebunders  5 , René Gerrets  6   7 , Koen Peeters Grietens  1   6   8 , Sarah O'Neill  1   9
Affiliations

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

Julia Irani et al. Qual Health Res. 2022 Aug.

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.

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

PubMed Disclaimer

Conflict of interest statement

Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

References

    1. Abbo C., Mwaka A. D., Opar B. T., Idro R. (2019). Qualitative evaluation of the outcomes of care and treatment for children and adolescents with nodding syndrome and other epilepsies in Uganda. Infectious Diseases of Poverty, 8(1), 30. 10.1186/s40249-019-0540-x - DOI - PMC - PubMed
    1. Acholi/people (n.d.). Encyclopedia britannica. Retrieved 21 December 2020, from https://www.britannica.com/topic/Acholi
    1. Amone-P’Olak K., Lekhutlile T. M., Ovuga E., Abbott R. A., Meiser-Stedman R., Stewart D. G., Jones P. B. (2016). Sexual violence and general functioning among formerly abducted girls in Northern Uganda: The mediating roles of stigma and community relations - the WAYS study. BMC Public Health, 16(1), 64. 10.1186/s12889-016-2735-4 - DOI - PMC - PubMed
    1. Atim P., Ochola E., Ssendagire S., Rutebemberwa E. (2016). Health seeking behaviours among caretakers of children with nodding syndrome in Pader District-Northern Uganda: A mixed methods study. PloS One, 11(7), Article e0159549. 10.1371/journal.pone.0159549 - DOI - PMC - PubMed
    1. Atim T., Mazurana D., Marshak A. (2018). Women survivors and their children born of wartime sexual violence in northern Uganda. Disasters, 42(S1), S61–S78. 10.1111/disa.12275 - DOI - PubMed

Publication types