Stigma among ebola disease survivors in Mubende and Kassanda districts, Central Uganda, 2022.

Abstract

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.