Stigma among Ebola Disease Survivors in Mubende and Kassanda districts, Central Uganda, 2022

Background Ebola disease survivors often experience stigma in multiple forms, including felt (perceived) stigma, enacted (action-based) stigma, and structural (institutional) stigma. On September 20, 2022, Uganda declared a Sudan Virus Disease (SVD, caused by Sudan ebolavirus ) 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. Methods We conducted a qualitative study during January 2023 in Mubende and Kassanda Districts. We conducted in-depth and key informant interviews with ten SVD survivors, ten household members of SVD survivors, and ten key informants (district officials and health workers in the affected communities). Interviews were recorded, translated, transcribed, and analyzed thematically. Results 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 SVD 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. Conclusion Survivors experienced felt stigma, enacted stigma, and structural stigma. Strengthening community engagement to counteract stigma, rethinking response activities that aggravate stigma, management of long-term SVD symptoms for survivors, integrated response interventions by partners, private distribution of support items, and increasing awareness and sensitization through video messages could reduce stigma among persons affected in future similar outbreaks. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This project was supported by the President’s Emergency Plan for AIDS Relief (PEPFAR) through the US Centers for Disease Control and Prevention Cooperative Agreement number GH001353 through Makerere University School of Public Health. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the US Centers for Disease Control and Prevention, the Department of Health and Human Services, Makerere University School of Public Health, or the MoH. The staff of the funding body provided technical guidance in the design of the study, ethical clearance and collection, analysis, and interpretation of data, and in writing the manuscript. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Not Applicable The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Before starting the project, a non-research determination form was submitted to the US Centers for Disease Control and Prevention (CDC) as a requirement. The Office of the Associate Director for Science at the CDC determined that the project did not involve human subjects research. This determination was made because the project aimed to address a public health problem and had the primary intent of public health practice. Further administrative approval to conduct this study was obtained from Mubende and Kassanda District offices, Mubende regional referral hospital case management team, the National Institute of Public Health, and Uganda Ministry of Health. Before data collection, written informed consent was sought from respondents, they were informed that their participation was voluntary and their refusal would not result in any negative consequences. To protect the confidentiality of the respondents, each was assigned a unique identifier which was used instead of their names. This activity was reviewed by CDC and was conducted consistent with applicable federal law and CDC policy. § §See e.g., 45 C.F.R. part 46, 21 C.F.R. part 56 42 U.S.C. §241(d) 5 U.S.C. §552a 44 U.S.C. §3501 et seq. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Not Applicable I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Not Applicable I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Not Applicable The datasets upon which our findings are based belong to the Uganda Public Health Fellowship Program. For confidentiality reasons the datasets are not publicly available. However, the data sets can be availed upon reasonable request from the corresponding author and with permission from the Uganda Public Health Fellowship Program. * SVD : Sudan virus disease ETU : Ebola treatment unit VHT : Village Health teams IDI : In-depth interview EVD : Ebola virus disease MoH : Ministry of Health CFR : Case Fatality Rate CDC : Centers for Disease Control and Prevention