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

Abstract

AbstractBackgroundEbola 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 bySudan 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.MethodsWe 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.ResultsSurvivors 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.ConclusionSurvivors 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.