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.
Original language | English |
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Article number | 10497323221085941 |
Journal | Qualitative Health Research |
Number of pages | 13 |
ISSN | 1049-7323 |
DOIs | |
Publication status | Published - 2022 |
Keywords
- nodding syndrome
- onchocerciasis
- epilepsy
- gender
- disability
- stigma
- Uganda
- sexual violence
- care-giving
- SEXUAL VIOLENCE
- SYNDROME-A
- DISORDER
- EPILEPSY
- CAREGIVERS
- STRESSORS
- CHILDREN
- ILLNESS
- WOMEN