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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; approximately 21% of people infected were children. Infectious disease-related stigma has been associated with lower testing and treatment, which can lead to diminished contact tracing, disease relapse, and increased disease spread. Disease-related stigma can also lead to social avoidance, lost jobs and housing, and interpersonal violence. Children are at risk for experiencing a dual stigma of disease infection as well as the stigmatization of orphanhood. This study examines how experiences of EVD infection in Sierra Leone, and preventive measures such as social distancing, are linked to experiences of stigma and social exclusion among those reintegrating into their communities.
Methods
Purposive maximum variation sampling was used to identify participants. Key informant interviews (n=42) and focus group discussions (n=27) were conducted across 5 districts in Sierra Leone, selected due to high prevalence of EVD and 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 (living with an infected person but not infected themselves) (42%) individuals, and community leaders (12%). Data were coded using a Grounded Theory approach informed by Thematic Content Analysis, using NVivo software.
Results
Most participants described negative experiences with social distancing and EVD-related stigma. Participants described two main sources of EVD-related stress: isolation from the community because of preventative measures such as social distancing and quarantine, and stigma related to infected or affected status. Stigmatization occurred at the individual, interpersonal, institutional, and societal levels. Survivors and their families note on-going stigmatization especially when physical sequelae of EVD persist. Children reported stigmatization not only from persistent physical sequelae of EVD but also due to being labeled an EVD survivor by the community more than three years after the outbreak.
Conclusion and Implications
Isolation- and stigma-related distress from infectious disease poses a public health concern beyond the disease itself. Understanding the causes and types of psychological distress and stigmatization experienced after an infectious outbreak can greatly inform how to address and prevent them. This study found that social distancing and EVD-related stigma were each prominent sources of psychological distress. These results suggest that isolation, both preventative and due to infection, and the enduring stigmatization of infected individuals and their families, demand coordinated responses to prevent and mitigate additional psychosocial harm. Because individuals who experience stigmatization may avoid testing and treatment, there is a risk of disease persistence and on-going social vulnerability during and after an infectious disease outbreak. Healthcare initiatives (including those for COVID-19, re-emerging cases of EVD, and other high-threat pathogens) require not only response to the outbreak, but to stigma as well. Children especially are at risk for developmental consequences of stigmatization. As stigmatization and discrimination happened across multiple levels of the social ecology, stigma-reduction and health-sensitization initiatives should target these multiple levels as well, and incorporate the experiences of child EVD survivors.