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. Author manuscript; available in PMC: 2025 Sep 13.
Published before final editing as: Stigma Health. 2024 Aug 5:10.1037/sah0000555. doi: 10.1037/sah0000555

Adaption and Validation of Scales to Measure COVID-19 Stigma Attitudes and Perceptions

Janet M Turan 2,*, Kaylee B Crockett 1, Young-il Kim 1, Melissa Ryan 1, Rekha Ramachandran 1, Lori Brand Bateman 1, Raegan W Durant 1, Gabriela R Oates 1
PMCID: PMC12431640  NIHMSID: NIHMS2006577  PMID: 40948952

Abstract

Stark racial and socioeconomic disparities in COVID-19 case rates manifested across the U.S. during the COVID-19 pandemic and were also observed in rates of COVID-19 testing. Targeted testing of populations at greatest risk for COVID-19, while effective in containing the spread of COVID-19, could propagate stigma and discrimination, especially when directed toward already marginalized communities. As is known from other health areas, stigmatization can drive people to deny or hide their illness, prevent or delay timely healthcare seeking, and can discourage people from adopting healthy behaviors, such as testing or precautions. In this study we sought to adapt and validate two scales from the HIV stigma literature to measure aspects of COVID-19 stigma, including measures of 1) negative attitudes toward people who get COVID-19 and 2) perceptions of stigma faced by people who get COVID-19 in the community. After working with stigma experts and community partners to adapt the scales, we implemented the items in a community-based survey of African American residents of neighborhoods with high social vulnerability in two counties in Alabama (n=302). Analytic methods included internal reliability testing and scale item reduction, construct validity examination, and bivariable and multivariable linear regression analyses to examine associations with conceptually important and statistically significant predictors. The final COVID-19 stigma scales developed through this process have good reliability and validity and can be used in future research and programs to understand and address disparities in uptake of testing and precautions for COVID-19 and future pandemics.

Keywords: COVID-19, Testing, Stigma, Measurement, Race

Introduction

Stark racial and socioeconomic disparities in COVID-19 case rates manifested across the U.S. during the COVID-19 pandemic. The proportion of African Americans infected by the virus was at least twice the proportion of African Americans in the overall population (Khalatbari-Soltani et al., 2020; Lieberman-Cribbin et al., 2020; Mackey et al., 2021; Millett et al., 2020; Thakur et al., 2020; Turner-Musa et al., 2020; Yancy, 2020); similar disparities have been reported for Hispanics/Latinx (Macias Gil et al., 2020; Rodriguez-Diaz et al., 2020). The association of race and ethnicity with increased COVID-19 risk is likely attributable to unequal social conditions – poverty, pollution, crowding, substandard housing, and service-sector employment – in communities of color, stemming from historic injustices and institutionalized racism (Abedi et al., 2021; Kim et al., 2020; Lewis et al., 2020; Maroko et al., 2020; Oates et al., 2021; Zhang & Schwartz, 2020).

Similar patterns of racial and socioeconomic disparities have been observed in COVID-19 testing rates (Jefferson et al., 2022; Karaye & Horney, 2020; Oates et al., 2021; Ruprecht et al., 2021). For example, racial and ethnic minorities and those in disadvantaged housing conditions without transportation are tested at lower rates than the general population (Hu et al., 2020; Mody et al., 2020). As a result, profound racial, ethnic, and socioeconomic disparities in COVID-19 test positivity have been documented. Higher test positivity has been linked to area-level social and environmental exposures, such as residence in neighborhoods with higher financial, housing, and transportation insecurity (Goyal et al., 2020; Oates et al., 2021; Rentsch et al., 2020; Rozenfeld et al., 2020), as well as non-White race, low-income levels, and larger household size (Whittle & Diaz-Artiles, 2020). It is clear that testing in socially vulnerable populations is paramount for COVID-19 and future pandemic control and critical for reducing health disparities (Oates et al., 2021).

Targeted testing of populations at greatest risk for COVID-19, while effective in containing the spread of COVID-19, could propagate stigma and discrimination, especially when directed toward already marginalized communities. Stigma refers to a social process in which negative attitudes toward persons with certain characteristics or health conditions distinguish them from other members of society (Goffman, 1963; Weiss & Ramakrishna, 2006; Williams et al., 2011). Individuals who perceive they are being stigmatized may internalize stigma and report guilt, self-blaming behavior, self-depreciation, self-isolation, low self-esteem, and being excluded or ignored by others (Levin & Laar, 2006). Stigmatization may lead to discrimination (Stuber et al., 2008), or treating members of stigmatized groups unfairly (American Psychological Association, 2019; Krieger, 2014). As seen in previous viral outbreaks and epidemics — including HIV, SARS, MERS, and Ebola (Fukuda et al., 2015; Person et al., 2004)—stigmatization can drive people to deny or hide their illness to avoid discrimination, prevent or delay timely healthcare seeking, and can discourage people from adopting healthy behaviors (Kane et al., 2019; Stangl et al., 2019), including testing and pre-exposure prophylaxis (Calabrese et al., 2018; Logie & Turan, 2020).

The COVID-19 epidemic resulted in stigma and discrimination against people based on racial and ethnic identities and perceived exposure to the disease in many settings around the globe (Baldassarre et al., 2020; Fahim et al., 2023; Gronholm et al., 2021; Rahman et al., 2023; Siu et al., 2023; Yashadhana et al., 2021). A systematic review of research, with individuals in more than 150 countries and territories spanning five continents, revealed that the most researched populations facing COVID-19 stigma have been Chinese and other Asian people, COVID-19 positive patients and survivors, and healthcare workers. The authors also found that characteristics of the stigmatized, stigmatizer, and the context contribute to COVID-19 stigma, which negatively influences victims’ health and non-health outcomes. In some settings, specific survey measures have been developed to measure COVID-19 stigma and examine associations with attitudes and behavior (Zhou et al., 2022). Much of this measure development has been conducted in Asia, where healthcare workers and other persons presumed to be exposed to COVID faced significant stigma and discrimination.(Huang et al., 2023; Nair et al., 2022) In the United States, Earnshaw et al. adapted stigma measures from previous studies of stigma associated with infectious diseases. These stigma measures were administered to 845 U.S. adults in an online survey in April 2020. The study found that participants who anticipated greater COVID-19 stigma and endorsed COVID-19 stereotypes were less likely to report that they would seek a COVID-19 test (Earnshaw et al., 2020).

These findings raise concern that socially vulnerable populations such as African Americans and those living in more either underserved urban or rural underserved areas of the United States may be particularly prone to COVID-19 stigma related to COVID testing. The Reducing Ethical and Social Prejudicial Effects of COVID-19 Testing in Underserved Populations (RESPECT-UP) project aimed to understand the social, ethical, and behavioral factors surrounding COVID-19 testing in socially vulnerable urban and rural African American communities in Alabama and subsequently to develop strategies to reduce the inequities in COVID-19 testing. Study findings informed collaboration with community members that determined priorities for and content of COVID-19 testing toolkits customized for different settings (healthcare, faith-based, and public housing).

In the current study, we sought to adapt and validate brief measures of COVID-19 stigma, developing measures that capture two important dimensions of community stigma: 1) negative attitudes toward people who get COVID-19 and 2) perceptions of stigma faced by people who get COVID-19 in the community. Although there are multiple COVID-19 stigma scales present in the literature, most of the scales were developed/validated with Chinese or other Asian populations (Nair et al., 2022; Nochaiwong et al., 2021; Yuan et al., 2021), and we recognized the need for measures developed together with African American communities with high social vulnerability in the United States. In addition, there are only a few validated measures that capture general community COVID-19 stigma (Earnshaw et al., 2020; Juniarti et al., 2023; Nochaiwong et al., 2021), while most scales capture the experiences of those who had COVID-19 (Reinius et al., 2023) or of those who provide health services to COVID-19 patients (Al Houri et al., 2022; Mostafa et al., 2021). We aimed to develop measures that can be used in research and programs to understand disparities in uptake of COVID-19 testing and precautions, and to examine associations of these measures with sociodemographic characteristics of people living in underserved urban and rural African American communities in Alabama.

Methods

RESPECT-UP study methods included a cross-sectional survey in two Alabama counties (one rural and one urban), focus groups with subsets of survey participants representing different perceived discrimination and COVID-19 testing attitudes, and in-depth interviews with rural and urban community members (representatives of clergy, healthcare, local government, media, and community organizations). The current study utilizes data from the RESPECT-UP cross-sectional survey administered in one urban county and one rural county in Alabama from May to August 2022.

Human Participation Protection

This study was approved by the Institutional Review Board of the University of Alabama at Birmingham, protocol # IRB-300008595.

Survey Methods

Recruitment.

A Community Advisory Board (CAB) consisting of 12 representatives of community-based, faith-based, healthcare, and social service organizations in both the rural and urban counties provided guidance on participant recruitment, data collection, intervention design and implementation. To further address mistrust in research due to both a history of medical research abuses and a broader legacy of racial discrimination, the CAB facilitated the recruitment of established members of the selected communities who were trained as study research coordinators. These established community members were called Community Engagement Coordinators (CECs), and they underwent required training in human subjects research, conflicts of interest, and data collection and integrity. Survey participants were subsequently recruited by the CECs using snowball sampling in community venues such as churches, grocery stores, community centers. Eligible participants included African American residents of neighborhoods that were in the top 20% of the 2018 CDC Social Vulnerability Index (SVI)(Centers for Disease Control and Prevention, 2022) in Jefferson (urban) or Dallas (rural) counties in Alabama.

Survey administration and content.

The survey, administered on iPads, included 149 questions. Questions on sociodemographic and health characteristics, COVID-19 testing, and vaccine acceptance came from the required (Tier 1) Common Data Elements set provided by the Rapid Acceleration of Diagnostics in Underserved Populations (National Institutes of Health, 2023), a National Institutes of Health research consortium studying COVID-19 testing patterns in communities across the country. Other survey measures included validated scales, as described below.

Measures:

To assess different dimensions of stigma related to COVID-19, we adapted validated measures that have been used to measure stigma in the general community around HIV and Pre-Exposure Prophylaxis (PrEP) in different settings globally. To measure stigma-related perceptions about and experiences of people who get infected with COVID-19, we adapted two sub-scales from the Project Accept community stigma measure: one scale measuring participants’ negative attitudes towards persons with the illness (10 items) and the second one measuring perceptions of stigma enacted against people with the illness in their community (7 items; Genberg et al., 2009) To measure anticipated stigma around COVID-19 testing itself, we adapted questions from HIV PrEP Anticipated Stigma Scale (Calabrese et al., 2018). We adapted scale items to apply to COVID-19 through an iterative process involving review of the existing literature on COVID-19 stigma, expert review by researchers, and review by our CAB. For these COVID-19 stigma measures, items were scored on a Likert scale ranging from 1 (Strongly Disagree) to 4 (Strongly Agree). Positive items were reverse-coded so that higher scores on the scales indicate more stigma.

To assess construct validity, we examined associations of our two primary COVID-19 stigma scales (negative attitudes and perceived community stigma) with measures in our survey that are conceptually associated with these measures. These included: anticipated COVID-19 testing stigma (described above), daily and lifetime discrimination, and number of COVID-related challenges experienced, such as loss of employment, food insecurity, or housing insecurity. Daily discrimination was measured with the Everyday Discrimination Scale (Short Version), and lifetime discrimination was measured with the Major Experiences of Discrimination (Abbreviated Version), both adapted from the National Survey of American Life for the Chicago Community Adult Health Study (Sternthal et al., 2011). For COVID-related challenges, respondents were asked to rate their experience of potential challenges due to COVID-19 as “Yes, major challenge”, “Yes, minor challenge”, or “No, not a challenge.” Challenges listed included: Getting the health care I need, Having a place to stay/live, Getting enough food to eat, Having clean water to drink, Getting the medicine I need, Getting to where I need to go, and Paying for utilities (heat, electricity, etc.). For the current analysis, the number of challenges the person considered to be either a major or minor challenge was used as the analytical variable.

Measures of socio-demographic characteristics captured in the survey included age, sex, religiosity, political affiliation, essential worker status (respondents were asked if they were considered to be an essential worker, defined as someone who was required to go to work even when stay-at-home orders are in place for COVID-19), and urban vs. rural residence.

Analytical Methods:

In this paper, we focus on our two scales of stigma towards and experienced by people with COVID-19 illness in the community: 1) the negative attitudes toward people with COVID-19 scale (referred to as negative attitudes below) and 2) the perceived community stigma faced by people with COVID-19 scale (referred to as perceived community stigma below).

Internal reliability testing and scale item reduction:

As a first step, we examined the internal reliability of the two scales by calculating Cronbach’s alpha. This allowed us to identify any items that compromised the reliability of the measures and drop them from the subsequent analyses. We conducted exploratory factor analysis using principal components analysis with varimax rotation with the revised scales and used the Kaiser-Meyer-Olkin (KMO) test to calculate Kaiser’s Measure of Sampling Adequacy for each of the scales.

Construct validity:

To examine construct validity, we assessed associations of our COVID-19 stigma scales with constructs that would be expected to be associated with COVID-19 stigma. Using bivariate linear regression analysis, we examined relationships with COVID-19 testing stigma, daily and lifetime discrimination, and the number of COVID-related challenges experienced. We hypothesized, a priori, that:

  • COVID-19 negative attitudes and perceived community stigma would both be positively associated with anticipated stigma around COVID-19 testing.

  • COVID-19 perceived community stigma would be positively associated with lifetime and daily experiences of discrimination.

  • COVID-19 perceived community stigma would be positively associated with number of COVID-related challenges faced.

  • COVID-19 negative attitudes would be higher in groups that are generally more socially and politically conservative in the US.

Associations with socio-demographic characteristics:

Associations of the COVID-19 stigma scales with socio-demographic characteristics of survey participants were initially examined using bivariate linear regression. We examined associations of COVID-19 stigma with age, sex, religiosity, political affiliation, essential worker status, and urban vs. rural residence.

Multivariable analysis:

In a final analysis, we used multivariable linear regression to examine the independent associations of conceptually important and statistically significant predictors from bivariate analyses with the two COVID stigma scales, while adjusting for socio-demographic characteristics.

Results

Characteristics of the Sample:

A total of 302 participants completed the survey: n=240 (80%) urban, n=61 (20%) rural, and 1 missing. The majority (74%) of participants were female, and mean age was 53.6 years. See Table 1.

Table 1:

Socio-demographic Characteristics of the Sample (N=302)

Variable Mean (SD) or n (%)
African-American race 294 (98.99%)
Age (years) 53.57 (15.66)
Female sex 224 (74.17%)
High school or less education 140 (47.46%)
Employed 119 (40.20%)
Religiosity
 Never attend religious services
 Several times a year
 1–2 times a month
 Once a week
 >= twice a week
24 (8.48%)
43 (15.19%)
74 (26.15%)
93 (32.86%)
49 (17.31%)
Strong Democrat political affiliation 174 (57.62%)
Essential worker 64 (21.19%)
Urban 240 (79.73%)
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Missing N: Race-5, Education-7, Employed-6, Religiosity-19, urban-1

*

Percentages calculated based on non-missing responses.

Internal Reliability and Sampling Adequacy of the Scales:

The initial 10-item scale of negative attitudes toward people with COVID-19 had relatively poor internal consistency, with Cronbach’s alpha of 0.458 (standardized). Examination of correlations between items and alphas after deletion revealed that three items were compromising the internal consistency, namely those related to isolation of people with COVID-19 (see Table 2), which were in fact consistent with current public health recommendations. Removal of the three items resulted in a 7-item scale with a Cronbach’s Alpha of 0.824 (standardized) suitable for further evaluation of a reliable scale (Nunnally & Bernstein, 1994). The scale of perceived community stigma faced by people with COVID-19 had a Cronbach’s alpha of 0.786 with the original 7 items, thus all 7 items were retained for further validity analyses of this scale. Kaiser’s Measure of Sampling Adequacy was calculated as 0.81 for both of the final scales (overall MSA), indicating suitability for factor analysis and good sampling adequacy.

Table 2.

Descriptive Statistics and Internal Reliability of COVID-19 Stigma Scale Items

Scale of Negative Attitudes toward People with COVID-19 (n=300)
Items+ # agreeing or strongly agreeing with the statement (%) Mean Standard Deviation Correlation with Total ** Alpha after deletion **
People who get COVID-19 should be ashamed. 6 (2.0) 0.604 0.542 0.4128 0.348
People who get COVID-19 deserve compassion.* 261 (87.0) 0.842 0.688 0.3943 0.355
People who get COVID-19 should be treated by health professionals with the same respect as people with other illnesses.* 290 (96.7) 0.615 0.638 0.444 0.336
A person who has COVID-19 should be allowed to work alongside other people. * 28 (9.3) 2.242 0.674 −0.290 0.578
Families of people who get COVID-19 should be ashamed. 5 (1.7) 0.642 0.548 0.414 0.348
People who get COVID-19 should be allowed to fully participate in social events in this community. * 36 (12.0) 2.200 0.718 −0.234 0.562
It is reasonable for an employer to fire people who get COVID-19. 9 (3.0) 0.608 0.563 0.313 0.386
People who get COVID-19 should be isolated from other people. 273 (91.0) 2.215 0.663 −0.306 0.582
People who get COVID-19 should be treated the same as everyone else.* 265 (88.3) 0.796 0.634 0.424 0.344
People who get COVID-19 deserve support.* 283 (94.3) 0.662 0.622 0.539 0.298
 
Scale of Perceived Community Stigma Faced by People with COVID-19 (n=291)
Item # agreeing or strongly agreeing with the statement (%) Mean Standard Deviation Correlation with Total ** Alpha after deletion **
People in this community who get infected with COVID-19 face neglect from their family. 49 (16.8) 0.984 0.718 0.630 0.736
People in this community who get infected with COVID-19 face ejection from their homes. 28 (9.6) 0.841 0.630 0.599 0.742
People in this community who get COVID-19 face physical abuse. 26 (8.9) 0.816 0.623 0.654 0.731
People in this community who get COVID-19 are subject to gossip and verbal abuse. 115 (39.5) 1.310 0.855 0.535 0.755
People in this community who get COVID-19 face rejection from their peers. 74 (25.4) 1.073 0.743 0.597 0.743
Most people would not buy food from a restaurant where they knew one of the workers has COVID-19. 233 (80.1) 2.114 0.738 0.002 0.848
People who are suspected of having COVID-19 lose respect in the community. 49 (16.8) 0.967 0.706 0.645 0.733
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+

Items in boldface were dropped from the final scale.

*

Reverse-coded

**

Standardized variables

Exploratory Factor Analysis

For the Negative Attitudes about People with COVID-19 scale, the PCA analysis yielded two factors with eigenvalues > 1. The 3 items that compromised the scale internal consistency all loaded on the second factor confirming our decision to remove those items. The first factor with the remaining 7 items of the scale accounted for 43% of the total variance. The Perceived Community Stigma Faced by People with COVID-19 also yielded two factors with eigenvalues greater than 1. Examination of the factors showed only 1 item on the second factor and thus we proceeded with a 1 factor solution that explained 49% of the total variance.

Examination of Construct Validity and Associations with Socio-Demographic Variables

In bivariate analyses (Table 3), negative attitudes toward people with COVID-19 were positively associated with increasing age (B = 0.03; 95% CI = 0.01, 0.06; p = 0.001), urban residence (B = 1.51; 95% CI = 0.69, 2.33; p < 0.001), and anticipated stigma around COVID-19 testing (B = 0.25; 95% CI = 0.19, 0.31; p < 0.001), while they were negatively associated with being a woman (B = −0.81; 95% CI = −1.56, −0.06; p = 0.04) or being an essential worker (B = −1.12; 95% CI = −1.92, −0.32; p = 0.007). Perceptions of stigma in the community faced by people with COVID-19 were positively associated with urban residence (B = 1.17; 95% CI = 0.18, 2.16; p = 0.02), daily discrimination (B = 0.18; 95% CI = 0.11, 0.25; p < 0.001), COVID-related challenges (B = 0.35; 95% CI = 0.08, 0.61; p = 0.01), and anticipated stigma around COVID-19 testing (B = 0.25; 95% CI = 0.18, 0.32; p < 0.001).

Table 3.

Bivariate Associations with COVID-19 Stigma Scale Scores

  Negative Attitudes toward people with COVID-19 (n=300) Perceived Community stigma faced by people with COVID-19 (n=291)
  Estimate (95% CI) p-value* Estimate (95% CI) p-value*
Conceptually Related Constructs
Anticipated stigma around COVID-19 testing 0.25 (0.19, 0.31) <0.001 0.25 (0.18, 0.32) <0.001
Daily discrimination −0.01 (−0.08, 0.05) 0.734 0.183 (0.10, 0.25) <0.001
Lifetime discrimination −0.17 (−0.44, 0.09) 0.203 0.18 (−0.14, 0.50 0.262
Number of COVID-19 related challenges 0.08 (−0.14, 0.30) 0.489 0.34 (0.08, 0.61) 0.010
Number of trusted sources of COVID-19 info 0.07 (−0.02, 0.15) 0.108 −0.01 (−0.11, 0.09) 0.905
 
Socio-Demographic Characteristics
Age 0.034 (0.01, 0.06) 0.001 −0.00 (−0.03, 0.02) 0.908
Female sex (ref=male) −0.81 (−1.56, −0.06) 0.035 −0.25 (−1.15, 0.64) 0.575
Rarely/never attend religious services (ref=monthly or more) −0.23 (−1.04, −0.58) 0.572 −0.69 (−1.60, 0.22) 0.138
Political affiliation strong democrat (ref=all other) 0.46 (−0.21, 1.13) 0.175 −0.23 (−1.02, 0.56) 0.573
Essential worker (ref=no) −1.12(−1.92, −0.32) 0.006 −0.44 (−1.39, 0.52) 0.368
Urban (ref=rural) 1.51 (0.69, 2.33) 0.000 1.17 (0.18, 2.16) 0.021
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*

Boldface indicates statistical significance

Multiple Regression Results

In multivariable analyses (Table 4), older age (B = 0.03; 95% CI = 0.01, 0.05; p = 0.01), male sex (B=0.71; 95% CI=0.001, 1.42; p = 0.05), and anticipated stigma around COVID-19 testing (B = 0.24; 95% CI = 0.17, 0.31; p < 0.001) remained significantly associated with more negative attitudes toward people who get COVID-19. Higher religiosity (B=0.98; 95% CI=0.10, 1.86; p = 0.03), daily discrimination (B = 0.09; 95% CI = 0.02, 0.17; p = 0.01), and anticipated stigma around COVID-19 testing (B = 0.20; 95% CI = 0.12, 0.28; p < 0.001) were significantly associated with more perceived community COVID-19 stigma.

Table 4.

Multiple Regression Analyses of Predictors of COVID-19 Stigma

  Negative Attitudes toward people with COVID-19 (n=281) Perceived Community Stigma faced by people with COVID-19 (n=273)
  Estimate (95% CI) p-value* Estimate (95% CI) p-value*
Conceptually Related Constructs
Anticipated stigma around COVID-19 testing 0.24 (0.17, 0.31) <0.001 0.20 (0.117, 0.277) <0.001
Daily discrimination − 0.09 (0.019, 0.17) 0.015
Lifetime discrimination − −
Number of COVID-19 related challenges − 0.21 (−0.04, 0.462) 0.099
 
Socio-demographics
Age 0.03 (0.01, 0.05) 0.011 −0.01 (−0.04, 0.02) 0.513
Female sex (ref=male) −0.71 (−1.42, −0.00) 0.049 0.12 (−0.72, 0.96) 0.780
Rarely/never attend religious services (ref=monthly or more) −0.39 (−1.14, 0.36) 0.311 −0.98 (−1.86, −0.09) 0.030
Political affiliation strong democrat (ref=all other) 0.08 (−0.58, 0.74) 0.810 −0.26 (−1.05, 0.53) 0.519
Essential worker (ref=no) −0.52 (−1.27, 0.24) 0.180 −0.32 (−1.22, 0.58) 0.485
Urban residence (ref=rural) 0.36 (−0.48, 1.20) 0.396 0.48 (−0.53, 1.50) 0.349
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*

Boldface indicates statistical significance

Discussion

We adapted and validated two measures of COVID-19 stigma that can be used to understand disparities in COVID-19 testing: a measure of negative attitudes toward people who get COVID-19 and a measure of perceptions of community stigma experienced by people who get COVID-19. We also examined associations of these measures with socio-demographic characteristics of African American residents of disadvantaged urban and rural communities in Alabama.

The adapted scales had good internal reliability (after dropping items consistent with current COVID-19 public health recommendations that diminished overall scale internal reliability) and were associated with some relevant constructs as hypothesized. Specifically, after adjusting for covariates in multivariate analyses, older individuals were more likely to endorse negative attitudes toward people with COVID-19, whereas women were less likely to endorse such negative attitudes. In terms of perceptions of community stigma faced by people with COVID-19, those experiencing more daily discrimination and those with higher religiosity were more likely to report higher perceptions of community stigma. People who reported higher anticipated stigma around COVID-19 testing were both more likely to endorse negative attitudes toward people with COVID-19 and perceive higher community stigma toward people with COVID-19.

The levels of negative attitudes about people with COVID-19 were low, but the independent associations with age and sex are interesting to note. As older age is a risk factor for COVID-19 severity and mortality (Dessie & Zewotir, 2021; Fang et al., 2020), older people, out of a sense of heightened vulnerability, may be more likely to harbor negative attitudes toward those who get infected with the virus and spread it to others. Although most recent evidence does not support the notion of women’s superior empathetic ability (Pang et al., 2023), our survey data suggests that, compared to men, women exhibit less negative attitudes toward people with COVID-19. It is possible that survey responses are sensitive to social priming, or expectations of women to care more about others’ feelings. Other socio-demographic characteristics measured in this study were not found to be significantly associated with the negative attitudes scale in multivariate analysis. For example, in contrast with findings from other settings (Mejia et al., 2021), we did not find differences according to essential worker status.

In terms of perceptions of stigma faced by people with COVID-19 in the community, our finding that religiosity is associated with increased perception of community stigma faced by people with COVID-19 is notable. Attending religious services is an important source of social support for many people in Alabama. It is possible that the switch to virtual religious services due to social distancing measures resulted in feelings of separation from or a complete loss of one’s church community and a significant portion of their social network. Such feelings among church goers could have translated into heightened perception of community stigma toward people with COVID-19. It is also possible that those who attended religious services more frequently had more opportunities to learn about how some people in the community were treated badly due to getting COVID-19. Daily experiences of discrimination were also associated with increased perceptions of COVID-19 stigma in the community, suggesting that people who are excluded or mistreated on the basis of race or other aspects of their identity may be more perceptive to, or at risk for, other forms of stigma in their communities. Racialization and othering are not new phenomena of the COVID-19 pandemic, and these longstanding dynamics of compounding marginalization can be anticipated and must be addressed in the context of stigmatized health conditions (Dionne & Turkmen, 2020; Yashadhana et al., 2021).

Anticipated stigma around COVID-19 testing was associated both with negative attitudes toward people with COVID-19 and increased perceptions of COVID-19 community stigma. These findings have critical implications for infection control, as they imply that people who perceive stigma around COVID-19 and COVID-19 testing would be less likely to test. In the context of HIV testing, this same pattern has been observed with people with more anticipated stigma around HIV being less likely to get tested for HIV (Turan et al., 2011). Therefore, overcoming both COVID-19 stigma and COVID-19 testing stigma are important targets for public health interventions aiming to increase testing in order to contain spread of infection during pandemics. Community engagement will be critical for overcoming stigma to increasing testing, vaccination, and other preventive, diagnostic and therapeutic measures against COVID-19 as well as other future pandemics to reduce further marginalization of already marginalized individuals (Disney et al., 2023; Henry Akintobi et al., 2020).

Findings from this study should be interpreted in light of the following limitations. This is a cross-sectional study and directionality of the described associations is not conclusive. The tested associations were based on formative research during the design of the study. Participants were recruited from urban and rural areas of Alabama during May-August 2022 after COVID-19 vaccines became available, and findings may not generalize to other regions or time periods. The small sample size and relatively low numbers of participants in some sub-groups may have limited our ability to find significant associations.

Despite these limitations, our study makes an important contribution to public health research and practice. The two COVID-19 stigma scales adapted and validated by our study – negative attitudes toward people with COVID-19 and perceptions of community stigma toward them – had good internal reliability and were associated with relevant constructs as hypothesized. To the best of our knowledge, this is the first adaptation of these scales to the context of COVID-19. From this analysis having established initial reliability and validity, future research may use the constructs of “negative attitudes towards people with COVID-19” and “perceived community stigma faced by people with COVID-19 ” and use multi-group Confirmatory Factor Analysis to assess how these constructs relate to outcomes in different groups (e.g., geographic regions, ethnic background). Both scales can be used in future research and programs to understand and address disparities in COVID-19 testing, vaccination, and other prevention and control measures. The study team used these findings to inform development of toolkits to be used in healthcare, faith-based, and housing settings to promote equitable access to COVID-19 testing.

Conclusions

We adapted and validated two stigma measures – negative attitudes and perceived community stigma toward people with an infectious disease – to the context of the COVID-19 pandemic. Both measures showed good internal reliability and construct validity and are available for use by researchers and public health practitioners working to understand and address disparities in COVID-19 prevention and control.

Suggested reviewers:

  1. Marija Pantelic, Lecturer in Public Health, Lead for MSc in Public Health, Brighton and Sussex Medical School (m.pantelic@bsms.ac.uk)

  2. Sarah Stutterheim, Associate Professor, Maastricht University (s.stutterheim@maastrichtuniversity.nl)

  3. Swagata Banik, Professor of Public Health and Prevention Science, Baldwin Wallace University (sbanik@bw.edu)

  4. Keisha Leanne Bentley-Edwards, Associate Professor, Duke University School of Medicine (keisha.bentley.edwards@duke.edu)

Clinical Impact Statement.

In this study we sought to adapt and validate two scales to measure aspects of COVID-19 stigma, including measures of 1) negative attitudes toward people who get COVID-19 and 2) perceptions of stigma faced by people who get COVID-19 in the community. The final COVID-19 stigma scales developed through this process have good reliability and validity and can be used in future research and programs to understand and address disparities in uptake of testing and precautions for COVID-19 and future pandemics.

Acknowledgments:

Special thanks to the following community partners: Cooper Green Mercy Health Services Authority, UAB Selma Family Medicine Practice, Tiara Straightened, The Black Belt Community Foundation, The YMCA of Greater Birmingham, Jefferson County Faith Alliance, Temple Gate Seventh Day Adventists, AL Regional Medical Services, Rural Health Medical Program, Alabama Practice Based Research Network, Birmingham Times, Courtney French Broadcasting, Selma Times, Alexander Broadcasting, Housing Authority of the Birmingham District, Selma Housing Authority, Birmingham Transportation Authority, and the West Alabama Public Transportation Authority.

Funding:

Research reported in this Rapid Acceleration of Diagnostics – Underserved Populations (RADx-UP) publication was supported by the National Institutes of Health under Award Numbers 1U01MD017432-01 and U24MD016258.

Footnotes

Mindful that our identities can influence our approach to science, the authors wish to provide the reader with information about our backgrounds. With respect to gender, when the manuscript was drafted, 5 authors self-identified as women and two as men.

Disclaimer: The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Disclosures: The author(s) declare no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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