Ebola Virus Disease Sensitization: Community-Driven Efforts in Sierra Leone.

The 2014-2016 West Africa Ebola outbreak was the largest in history, resulting in approximately 11,000 deaths. Despite the outbreak's eventual end, national and international health sensitization and containment efforts were subject to criticism. This study investigates disease-related knowledge and beliefs, as well as trusted sources of health information among EVD-survivors and their family members, highlighting the importance of community-informed public health responses. Participants (n = 134) were adults who were either EVD-infected, affected families/caregivers, or community leaders. In-depth interviews and focus groups explored EVD-related experiences, including health effects, stigma, and community relationships. Using a grounded theory and thematic content analysis approach, transcripts were coded for evidence of health sensitization, as well as compliance with mitigation measures and trusted sources of information. Participants displayed a high level of knowledge around EVD and reported compliance with mandated and personal prevention measures. Levels of health sensitization and subsequent reintegration of survivors were reported to be largely the products of community-based efforts, rather than the top-down, national public health response. Primary sources of trusted information included EVD survivors acting as peer educators; local leaders; and EVD sensitization by community health workers. This study highlights the importance of a community-based response for increasing the effectiveness of public health campaigns. Participants expressed that relying on the experiences of trusted cultural insiders led to a deeper understanding of Ebola compared to top-down public health campaigns, and helped infected and affected community members reintegrate. Future public health efforts should incorporate community-based participatory approaches to address infectious disease outbreaks.

Social distancing, community stigma, and implications for psychological distress in the aftermath of Ebola virus disease.

BACKGROUND: The 2013-2016 Ebola virus disease (EVD) epidemic resulted in more infections and deaths than all prior outbreaks in the 40-year history of this virus combined. This study examines how experiences of EVD infection, and preventive measures such as social distancing, were linked to experiences of stigma and social exclusion among those reintegrating into their communities. METHODS: Key informant interviews (n = 42) and focus group discussions (n = 27) were conducted in districts with a high prevalence of EVD and representing geographical and ethnic diversity (n = 228 participants). The final sample was composed of adults (52%) and children (48%) who were EVD-infected (46%) and -affected (42%) individuals, and community leaders (12%). Data were coded using a Grounded Theory approach informed by Thematic Content Analysis, and analyzed using NVivo. Interrater reliability was high, with Cohen's κ = 0.80 or higher. FINDINGS: Participants described two main sources of EVD-related stress: isolation from the community because of social distancing and other prevention measures such as quarantine, and stigma related to infected or affected status. Participants linked experiences of social isolation and stigma to significant distress and feelings of ostracization. These experiences were particularly pronounced among children. Sources of support included community reintegration over time, and formal community efforts to provide education and establish protection bylaws. INTERPRETATION: This study found that social distancing and EVD-related stigma were each prominent sources of distress among participants. These results suggest that isolation because of infection, and the enduring stigmatization of infected individuals and their families, demand coordinated responses to prevent and mitigate additional psychosocial harm. Such responses should include close engagement with community leaders to combat misinformation and promote community reintegration.