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.
Nipah virus (NiV) is a bat-transmitted paramyxovirus causing recurrent, high-mortality outbreaks in South and South-East Asia. As a WHO priority pathogen, efforts are underway to develop therapies like monoclonal antibodies and small-molecule antivirals, which require evaluation in clinical trials. However, trial design is challenging due to limited understanding of NiV’s clinical characteristics. Given the rarity of NiV infections, strategies targeting improved outcomes for the broader acute encephalitis syndrome (AES) patient population, including those with NiV, are essential for advancing therapeutic research. To address these gaps, we designed the Bangladesh AES cohort study to characterise the patient population, clinical features, treatment practices, common aetiologies and outcomes in patients presenting with AES, including NiV infection, as a clinical characterisation study to inform the design of clinical trials for NiV and AES more broadly.
This prospective cohort study will be conducted in Bangladesh, a NiV endemic country with annual outbreaks. In collaboration with the ongoing NiV surveillance programme in Bangladesh, we aim to enrol up to 2000 patients of all ages presenting with AES at three tertiary care hospitals within the Nipah belt. Patients who provide informed consent to participate will be monitored throughout their hospital stay until 90 days post enrolment. Data will be systematically collected through interviews and medical record reviews at several time points: on the day of enrolment, day 3, day 7, the day of critical care admission (if applicable), discharge day and 90 days post enrollment. Additionally, a portion of the cerebrospinal fluid collected under the concurrent NiV surveillance protocol will be tested for an array of viral and bacterial pathogens responsible for encephalitis at the International Centre for Diarrhoeal Disease Research Bangladesh (icddr,b) laboratory.
The study received ethical approval from the Oxford Tropical Research Ethics Committee, University of Oxford, UK (OxTREC Ref: 576–23) and the institutional review board of icddr,b, Bangladesh (icddr,b protocol number: 24016). By characterising the AES patient population, this study will generate essential evidence on key clinical parameters, which will be pivotal in optimising the design of clinical trials for potential interventions aimed at improving outcomes in patients with AES, including those with NiV disease. Findings will be shared with participating hospitals, patients and relevant government stakeholders. Results will also be disseminated through conference presentations and peer-reviewed publications.
Not applicable (this is an observational study).