COVID-19 Stigma

Lessons from research on past infectious disease outbreaks  teach us that stigma and discrimination will pose additional barriers to health and wellness during the COVID-19 pandemic. During any outbreak, stigma and discrimination hurt efforts to control the spread of the virus  by undermining widespread testing and proper treatment.

Stigma caused by social distancing

Social distancing, or physical distancing, is the public health recommendation to keep a safe space of six feet between yourself and others to help reduce the spread of disease. Although social distancing is an effective and necessary tool to limit the spread of COVID-19, it can also have unintended health impacts. Limited social interaction can increase feelings of loneliness, depression, anxiety, and stress. The guidelines of social distancing and mask-wearing create a situation ripe for blame, increasing the potential for stigma and discrimination.

There are several examples from around the world that demonstrate how individuals are experiencing COVID-19 stigma:

• Enacted stigma: Asian and Pacific Islander individuals and communities have faced discrimination due to the presumption that they carried the virus from China, and people who acquired COVID-19 may be shunned by others who blame them for being sick and who fear that they will spread the virus
• Internalized stigma: Individuals who have contracted the virus may believe they did something wrong to get it, such as not washing their hands enough or failing to adhere to mask-wearing and social distancing guidelines
• Anticipated stigma: Fear of discrimination has discouraged some people from disclosing their exposure or status, or from getting tested or treated, thus hindering local contact tracing and virus containment efforts 
• Associated stigma: Healthcare workers and family members have been harassed and discriminated against due to their proximity to people who have contracted the virus
• Perceived stigma: Some people have perceptions that people talk badly about or blame those living with COVID-19, such as “they got what they deserved,” or “they should be ashamed”

Vulnerable populations

Combatting stigma is an essential component in the global fight against COVID-19.  The impact of the stigma during the pandemic is particularly detrimental to the health of priority and minority populations, who already face systemic disadvantages and inequities. According to the Centers for Disease Control and Prevention (CDC), Black, Latinx and Native Americans in the U.S. have higher rates of COVID-19 illness and death  which is not only a result of existing inequities but also further exacerbates them. Racial-ethnic minorities, women, undocumented workers, and people of lower socioeconomic status are most likely to be essential workers and thus face additional stigma  as they are less able to stay home, social distance, and avoid risk of infection. Past experiences confronting stigma within the health system or fears of discrimination may also discourage these groups from seeking care when symptoms arise.

Based on research from past infectious disease outbreaks, COVID-related stigma will continue to spread  even after the disease itself disappears. Those associated with the illness may carry lasting effects of stigma. Recent research shows that many people are “long haulers,” or experience symptoms for months after acute infection. It is possible that these “long haulers” will continue to experience stigma similar to chronic-illness stigma (for example, beliefs that they cannot be relied on because they are unwell, or they are a bad worker or a bad relationship partner), or similar to infectious disease (for example, they are dangerous because they could infect others).

The resources below provide stakeholders with lessons learned in stigma reduction efforts from other disease areas and global contexts that can be harnessed to address the pandemic.

• The World Health Organization’s Coordinated Global Research Roadmap : This roadmap sets two research priorities that comprise stigma: 1) understanding how individuals and communities are communicating and making sense of COVID-19, and identifying the most effective ways to address the underlying drivers of fear, anxieties, rumors, and stigma to improve public knowledge, awareness, and trust during the response; and 2) determining relevant, acceptable and feasible approaches for rapid engagement and good participatory practice that includes communities in the public health response without further stigmatizing. Given that we can adapt from other disease areas, it is likely that both priorities can be addressed by examining existing stigma research.
• NIH’s LitCovid  (search “stigma”): This is a curated literature hub for tracking up-to-date scientific information about the 2019 novel Coronavirus. It is the most comprehensive resource on the subject, providing central access to relevant articles in PubMed. The articles are updated daily and are further categorized by different research topics and geographic locations for improved access.

Frameworks and Models Section – COVID-19 Stigma Application

Several stigma models from the literature could be applied to COVID-19 stigma.

The Stigma Mechanisms in Health Disparities Model  could be used to show how COVID-19 stigma may be manifested at the sociocultural (for example, policies that marginalize people experiencing or recovering from COVID-19), interpersonal (such as low social support of people with COVID-19), and individual (such as anticipated COVID-19 stigma) levels. These manifestations, in turn, can impact people’s health by undermining health behaviors (for example, reducing engagement in COVID-19 testing), increasing stress, and leading to biological changes (such as reduced immune system functioning), which can result in poor mental and physical health outcomes.

The table below provides examples of how the Health Stigma and Discrimination Framework  (HSDF) could be applied to COVID-19.

Measures Section – COVID-19 Stigma Application

This section highlights how several stigma measures from the literature could be applied to COVID-19 stigma.

Chronic-Illness Anticipated Stigma Scale (CIASS)
The Chronic-Illness Anticipated Stigma Scale (CIASS) has been adapted to COVID-19 . Items included:

• “A friend or family member would be angry with me”
• “A friend or family member will blame me for getting sick”
• “A friend or family member will think it was my fault that I got sick with coronavirus”
• “My employer will fire me”
• “Someone at work will discriminate against me”
• “Someone at work will blame me for getting sick.”

This measure, along with a measure of COVID-19 stereotypes, predicted lower likelihood of COVID-19 testing. These measures are available online.

Berger HIV Scale 

The Berger HIV Scale (at the individual level) could be applied to COVID-19:

• Internalized COVID-19 stigma: The belief you did something wrong to get it, like didn’t wash your hands enough, etc.
• Enacted COVID-19 stigma: Experiencing mistreatment by neighbors or coworkers because of health condition
• Anticipated COVID-19 stigma:
  • expectations of mistreatment if you become infected or if others know about your condition
  • impacts people’s willingness to disclose their exposure or infection status, and engage in testing
• Perceived COVID-19 stigma: Perceptions that people blame and shame or talk badly about people living with COVID-19 such as:
  • People who become infected with COVID-19 got what they deserved
  • COVID-19 is punishment from “God” (or other religious entities)
  • People who become infected with COVID-19 should be ashamed

Validated COVID Stigma Scales

• COVID Stress Scales (CSS) 
  • Taylor and colleagues developed the 36-item COVID Stress Scales (CSS). A stable 5-factor solution was identified, corresponding to scales assessing COVID-related stress and anxiety symptoms: (1) Danger and contamination fears, (2) fears about economic consequences, (3) xenophobia, (4) compulsive checking and reassurance seeking, and (5) traumatic stress symptoms about COVID-19. The scales performed well on various indices of reliability and validity. The scales offer promise as tools for better understanding the distress associated with COVID-19 and for identifying people in need of mental health services.