Zalwango Marie Gorreti, Paige Sarah, Migisha Richard, Nakafeero Simbwa Brenda, Nsubuga Edirisa Junior, Asio Alice, Kabami Zainah, Zalwango Jane Frances, Kawungezi Peter Chris, Wanyana Mercy Wendy, King Patrick, Naiga Hellen Nelly, Agaba Brian, Zavuga Robert, Earle-Richardson Giulia, Kwesiga Benon, Bulage Lilian, Kadobera Daniel, Ario Alex Riolexus, Harris Julie R
Uganda Public Health Fellowship Program-Uganda National Institute of Public Health, Kampala, Uganda.
United States Agency for International Development, Kampala, Uganda.
PLOS Glob Public Health. 2024 Dec 16;4(12):e0003272. doi: 10.1371/journal.pgph.0003272. eCollection 2024.
Ebola disease survivors often experience stigma in multiple forms, including felt (perceived) stigma, enacted (action-based) stigma, and institutional stigma. On September 20, 2022, Uganda declared a Sudan Virus Disease (species orthoebolavirus sudanense) outbreak after a patient with confirmed Sudan virus (SUDV) infection was identified in Mubende District. The outbreak led to 142 confirmed and 22 probable cases over the next two months. We examined the types of stigma experienced by survivors and their household members and its effect on their well-being. We conducted a qualitative study during January 2023 in Mubende and Kassanda Districts. We conducted in-depth and key informant interviews with ten SUDV disease survivors, ten household members of SUDV disease survivors, and ten key informants (district officials and health workers in the affected communities). Interviews were recorded, translated, transcribed, and analyzed thematically. Survivors reported experiencing isolation and rejection by community members and loss of work. They reported being denied purchases at shops or having their money collected in a basket and disinfected (enacted stigma), which led to self-isolation (felt stigma). Educational institutions denied admission to some students from affected homes, while parents of children in some affected families stopped sending children to school due to verbal abuse from students and teachers (structural stigma). Prolonged SUDV disease symptoms and additional attention to survivors from responders (including home visits by health workers, public distribution of support items, and conspicuous transport from home to the survivor's clinic) were perceived as aggravating both felt and enacted stigma. Even after the outbreak had been declared over, survivors felt that they were still considered a threat to the community. Survivors experienced mainly enacted stigma which was aggravated by the outbreak response and control activities such as additional attention to survivors from responders. Strengthening community engagement to counteract stigma, rethinking response activities that aggravate stigma, integrated response interventions by partners, private distribution of support items, and increasing awareness and sensitization could reduce stigma among the Ebola disease survivors in future responses.
埃博拉疾病幸存者常常遭受多种形式的污名化，包括感知到的污名、基于行为的污名和制度性污名。2022年9月20日，乌干达在穆本德区发现一名确诊感染苏丹病毒（SUDV）的患者后，宣布爆发苏丹病毒病（苏丹正埃博拉病毒种）疫情。在接下来的两个月里，该疫情导致142例确诊病例和22例疑似病例。我们调查了幸存者及其家庭成员所经历的污名类型及其对他们幸福感的影响。2023年1月，我们在穆本德区和卡桑达区开展了一项定性研究。我们对10名苏丹病毒病幸存者、10名苏丹病毒病幸存者的家庭成员以及10名关键信息提供者（受影响社区的地区官员和卫生工作者）进行了深入访谈和关键信息访谈。访谈进行了录音、翻译、转录并进行了主题分析。幸存者报告称，他们遭到了社区成员的孤立和排斥，还失去了工作。他们表示在商店购物时被拒，或者钱被放在篮子里收集起来并进行消毒（基于行为的污名），这导致了自我孤立（感知到的污名）。教育机构拒绝一些来自受影响家庭的学生入学，而一些受影响家庭的孩子的家长因学生和教师的言语虐待而不再送孩子上学（结构性污名）。苏丹病毒病的长期症状以及应对人员对幸存者的额外关注（包括卫生工作者的家访、支持物品的公共分发以及从家中到幸存者诊所的显眼运送）被认为加剧了感知到的污名和基于行为的污名。即使在宣布疫情结束后，幸存者仍觉得他们仍被视为对社区的威胁。幸存者主要经历了基于行为的污名，而疫情应对和控制活动（如应对人员对幸存者的额外关注）加剧了这种污名。加强社区参与以消除污名、重新思考加剧污名的应对活动、合作伙伴的综合应对干预措施、支持物品的私人分发以及提高认识和开展宣传活动，可能会在未来的应对行动中减少埃博拉疾病幸存者中的污名现象。
