{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,4]],"date-time":"2026-05-04T22:27:46Z","timestamp":1777933666288,"version":"3.51.4"},"reference-count":58,"publisher":"SAGE Publications","issue":"10","license":[{"start":{"date-parts":[[2022,5,13]],"date-time":"2022-05-13T00:00:00Z","timestamp":1652400000000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100011878","name":"Vlaamse regering","doi-asserted-by":"publisher","award":["EE145 4150"],"award-info":[{"award-number":["EE145 4150"]}],"id":[{"id":"10.13039\/501100011878","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Qual Health Res"],"published-print":{"date-parts":[[2022,8]]},"abstract":"<jats:p>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\u00a0years 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.<\/jats:p>","DOI":"10.1177\/10497323221085941","type":"journal-article","created":{"date-parts":[[2022,5,18]],"date-time":"2022-05-18T18:15:45Z","timestamp":1652897745000},"page":"1544-1556","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":2,"title":["\u2018There Were Moments We Wished She Could Just Die\u2019: The Highly Gendered Burden of Nodding Syndrome in Northern Uganda"],"prefix":"10.1177","volume":"32","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0224-1794","authenticated-orcid":false,"given":"Julia","family":"Irani","sequence":"first","affiliation":[{"name":"Department of Public Health, Institute of Tropical Medicine, Antwerp, Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Joseph","family":"Rujumba","sequence":"additional","affiliation":[{"name":"Department of Paediatrics and Child Health, School of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Amos Deogratius","family":"Mwaka","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, School of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda"},{"name":"The Ugandan Ministry of Health, Kampala, Uganda"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jesca","family":"Arach","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, School of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Denis","family":"Lanyuru","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, School of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Richard","family":"Idro","sequence":"additional","affiliation":[{"name":"Department of Paediatrics and Child Health, School of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda"},{"name":"The Ugandan Ministry of Health, Kampala, Uganda"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Robert","family":"Colebunders","sequence":"additional","affiliation":[{"name":"Global Health Institute, University of Antwerp, Antwerp, Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ren\u00e9","family":"Gerrets","sequence":"additional","affiliation":[{"name":"The Amsterdam Institute for Social Science Research, University of Amsterdam, Amsterdam, Netherlands"},{"name":"The Amsterdam Institute for Global Health and Development (AIGHD), Amsterdam, Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Koen","family":"Peeters Grietens","sequence":"additional","affiliation":[{"name":"Department of Public Health, Institute of Tropical Medicine, Antwerp, Belgium"},{"name":"The Amsterdam Institute for Social Science Research, University of Amsterdam, Amsterdam, Netherlands"},{"name":"School of Tropical Medicine and Global Health, Nagasaki University, Nagasaki, Japan"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8807-0991","authenticated-orcid":false,"given":"Sarah","family":"O\u2019Neill","sequence":"additional","affiliation":[{"name":"Department of Public Health, Institute of Tropical Medicine, Antwerp, Belgium"},{"name":"CR5\u2013School of Public Health and LAMC, Facult\u00e9 de Philosophie et Sciences Sociales, Universit\u00e9 Libre de Bruxelles, Brussels, Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2022,5,13]]},"reference":[{"key":"bibr1-10497323221085941","doi-asserted-by":"publisher","DOI":"10.1186\/s40249-019-0540-x"},{"key":"bibr2-10497323221085941","volume-title":"Encyclopedia britannica","author":"Acholi\/people"},{"key":"bibr3-10497323221085941","doi-asserted-by":"publisher","DOI":"10.1186\/s12889-016-2735-4"},{"key":"bibr4-10497323221085941","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0159549"},{"key":"bibr5-10497323221085941","doi-asserted-by":"publisher","DOI":"10.1111\/disa.12275"},{"key":"bibr6-10497323221085941","volume-title":"The roots of ethnicity: The origins of the Acholi of Uganda before 1800","author":"Atkinson R. 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