Ebola disease stigma: mixed methods insights from the 2022 Sudan ebolavirus outbreak

Ebola disease stigma hinders outbreak control and recovery by deterring care-seeking and driving social exclusion. Although this phenomenon is well recognised, gaps remain in understanding how stigma emerges and operates in outbreak settings, limiting the development of effective reduction strategies. The objective of this study was to examine the drivers, manifestations and public health impacts of stigma following the 2022-2023 Sudan ebolavirus outbreak in central Uganda.

We conducted a cross-sectional, mixed-methods survey to assess Ebola disease stigma in June 2024.

The study was conducted in the Ugandan districts of Mubende, Kassanda and Kyegegwa, which were heavily affected by the outbreak.

A total of 302 respondents completed the survey. Respondents included all 51 eligible adult Ebola survivors in the districts known to the research team, as well as household members, healthcare workers, outbreak support staff and the general public.

The interviewer-administered survey explored personal experiences of stigma, community attitudes and impacts on outbreak control. We used a pillar integration process to identify themes across quantitative and qualitative data in three domains (drivers, manifestations and impacts of stigma).

Participants identified several perceived drivers of stigma, including fear, hygiene-focused public health messaging, distrust in public services and criminal connotations inferred from the outbreak response. Manifestations, including self-stigma and associative stigma, endured beyond the outbreak and across contexts. Nearly all survivors interviewed (n=48, 94%) reported multiple experiences of stigmatisation since discharge, with almost half (n=25, 49%) reporting physical harm or threats. Stigma was reported to affect care-seeking, healthcare worker morale and community socioeconomic well-being.

Stigma remains a major barrier to Ebola disease outbreak control and recovery. The high levels of stigma reported by survivors and anticipated by community members highlight the urgent need for targeted interventions in future outbreaks. We specifically show there are opportunities to address misinformation, avoid criminal connotations in outbreak control efforts and enable peer support.