Understanding COVID-19 Risk Perceptions and Precautionary Behaviors in Black Chicagoans: A Grounded Theory Approach

Abstract

Objectives

To determine whether actual community-level risk for COVID-19 in the Black community influenced individual perceptions of community-level and personal risk and how self-assessment of personal risk was reflected in the adoption of COVID-19 precautionary behaviors.

Methods

Semistructured interviews were conducted with 20 Black Chicago adults from February to July 2021. A grounded theory approach was used for the qualitative analysis and initial, focused, and theoretical coding were performed.

Results

We developed a grounded model consisting of four major themes: (a) Pre-Existing Health Conditions; (b) Presence of COVID-19 Infection in Participant Social Network; (c) COVID-19-Related Information, Participant Trust, and Perceived Personal Risk; and (d) Perceived Higher Burden of COVID-19 in the Black Community.

Conclusions

Higher perceptions of personal risk were shaped by pre-existing health conditions and experiences with COVID-19 in one’s social network but were not influenced by perceived higher burden of COVID-19 in the Black community.

Policy Implications

Black adults’ perceptions of their individual risk and precautionary behaviors were not congruent with public health data and recommendations. Therefore, COVID-19 messaging and mitigation should be informed by local community engagement and transparent communication.

Introduction

The coronavirus pandemic (COVID-19) began spreading in the United States and around the world by January 2020 (Centers for Disease Control and Prevention [CDC], 2022a). By March of 2022, the total number of COVID-related deaths had reached around 6 million globally and close to 1 million in the United States, with an estimated burden of disease of 32,000 disability-adjusted life years (DALYs) (Center for Systems Science and Engineering [CSSE], Johns Hopkins University [JHU], 2022; Fan et al., 2021). While COVID-related morbidity and mortality continue to be a significant source of concern, COVID-19 has also led to substantial life changes and disruption to normal daily activity, all of which necessitated significant lifestyle and behavior change. In particular, the stay-at-home orders, business closures, remote learning and work, as well as mask mandates and social distancing orders have prompted people to rapidly adopt new precautionary behaviors. Decades of public health and behavioral research have shown that behavior change is challenging (Conner & Norman, 2017). Adopting new behaviors or adapting old ones is likely even more difficult while enduring the stress of a global pandemic. These adaptations are particularly important for populations disproportionately affected by the pandemic.

The COVID-19 pandemic has highlighted long-standing socioeconomic and health disparities (Ndugga & Artiga, 2021). Racial and ethnic minorities have been disproportionately impacted by COVID-19, putting them at greater risk of morbidity and mortality. For instance, although only 20% of counties in the United States are predominantly Black, they accounted for more than half of all the COVID-19 diagnoses and close to 60% of the deaths (CDC, 2022b; Millett et al., 2020). Even with the availability of the COVID-19 vaccines, Black people are getting vaccinated at lower rates (12%) compared to their White counterparts (60%) and subsequently continue to be at 2.4 times higher risk of hospitalization and 1.6 times higher risk of death from COVID-19 (CDC, 2022c). Given their increased risk of contracting and dying from COVID-19 as well as the history of lower health-care access, economic disadvantage, and health-care mistrust (Abrams & Szefler, 2020; Bogart et al., 2020), it is important to consider factors influencing the COVID-related precautionary behaviors of racial minorities during the pandemic in order to improve the health of these communities and curtail health disparities.

One significant predictor of behavior may be perception of risk, a recurrent construct in health behaviors theories (e.g., Health Belief Model, Protection Motivation Theory; Becker, 1974; Rogers, 1975). The motivation to engage in (e.g., vaccination) or avoid (e.g., smoking) certain behaviors is thought to be influenced by individuals’ assessment of the associated probability of health consequences. This pathway was demonstrated empirically in a meta-analysis that showed that risk perception, particularly perceived likelihood and susceptibility, was a significant predictor of adult vaccination uptake (Brewer et al., 2007). Although absolute risk can be thought of as objective, the formation of risk perceptions is subjective and multifaceted; it is the product of personal experiences (e.g., disease diagnoses among family members), exposure to health information (e.g., how the threat is portrayed in the media), or contextual factors (e.g., imminence of threat; Chen & Kaphingst, 2011; Shepperd et al., 2000; Slovic, 1987). In the context of COVID-19, characterized by its unprecedented scale, constant flow of health information, and co-occurring domestic strife, it is important to understand how risk perceptions were formulated and whether they were linked to engagement in precautionary behaviors. This study explores perceptions of COVID-19 risk in a sample of community-dwelling Black adults in Chicago. This setting is significant; Chicago exemplified the profound racial inequities exposed by the pandemic: cases and deaths were concentrated in vulnerable, low-income neighborhoods with a high proportion of Black residents (Kim & Bostwick, 2020; Maroko et al., 2020). These patterns are not surprising, given the legacy of redlining and segregation in Chicago, which are a direct manifestation of structural racism (Nardone et al., 2020). Historically Black neighborhoods were and continue to be disconnected from economic opportunities and investments, leading to high rates of poverty in these areas (Massey et al., 1994). Residents of these neighborhoods are therefore at greater risk for suboptimal health outcomes (Williams & Collins, 2001). Understanding how a community at higher risk collectively appraises risk and uptakes precautionary behaviors is essential to designing and implementing targeted and effective mitigation strategies. The aims of this study are to determine (a) whether actual community-level risk (i.e., the documented disproportional burden of COVID-19 on communities of color and Black communities specifically) influenced individual perceptions of community-level and personal risk and (b) how self-assessment of personal risk was reflected in the adoption of COVID-19 precautionary behaviors (e.g., mask-wearing and vaccine uptake).

Methods

The research team used a grounded theory approach to understand how individual perceptions of COVID-19 risk were shaped and subsequently influenced the adoption of precautionary behaviors among Black adults in Chicago during the pandemic (Charmaz, 2014). The grounded theory methodology is optimal to generate an understanding of novel phenomena that may not be readily explicated by existing literature and theories. This approach was thus appropriate to understand behavior amid the unfamiliar environment imposed by the COVID-19 pandemic.

Setting and Sample

All study procedures and materials were approved by the University of Illinois at Chicago Institutional Review Board. This study is part of a larger quantitative survey of community stressors, resources, and mental health among Black and White Chicagoans. Following the survey, we recruited Black participants to engage in in-depth interviews on their pandemic-related experiences. We used a purposeful, heterogeneous sampling strategy to reflect the diversity of the larger survey sample on the dimensions of age, gender, income, and utilization of community resources during the pandemic. To be eligible for interviews, participants had to self-identify as non-Hispanic Black, be 18 years of age or older, currently reside in Chicago, and able to conduct the interview in English.

Data Collection

The six co-authors developed the interview guide, which was pilot tested and iteratively refined as new concepts emerged from interviews. Exemplar questions include: “At the beginning of the pandemic, what were your beliefs about how badly the coronavirus infection would affect your health? How have your beliefs changed over time?” and “How do you think the Black community has been affected relative to other groups?” Interviews occurred between February and July 2021—for context, the Pfizer and Moderna vaccines were granted emergency use authorization in December 2020. Interviewees participated in a one-time interview over Zoom which lasted 45–60 minutes and were facilitated by trained interviewers (P.C., N.A., and A.M.R.); participants were compensated for their time. After each session, interviewers created field notes which were compiled on a shared project spreadsheet to track emergent and divergent patterns. The interview team met weekly to discuss field notes and refinements to the interview guide. Interviews were recorded, transcribed verbatim, checked for accuracy, and uploaded to Dedoose for qualitative analysis.

Data Analysis

A team of three coders (P.C., N.A., and A.M.R.) led a constant comparative analysis of the transcripts and each transcript was analyzed by at least two coders to achieve investigator triangulation (Charmaz, 2014). Our coding process followed three iterative phases: initial coding, focused coding, and theoretical coding (Thornberg & Charmaz, 2014). The coding team developed a codebook informed by the data that were iteratively refined as analysis progressed. Codes were then grouped in higher-order categories then relationships between categories were clarified, producing a grounded theoretical model. Coding continued until no more themes were produced (i.e., theoretical saturation). All team members met weekly via Zoom to discuss coding and emergent themes, update the codebook, and resolve discrepancies through discussion until consensus was reached.

Results

We conducted 20 interviews with Black community members in Chicago; participant characteristics are presented in Table 1. Themes emerged inductively: the resulting grounded theoretical model (Figure 1) integrated four main themes and 13 subthemes that were saturated and inter-related; each theme is labeled as a “path” on the figure and in the section below to illustrate the interconnection of concepts. Illustrative quotes from interviews are presented in Table 2.

Table 1.

Participants’ Characteristics (n = 20).

Characteristics	n (%)
Mean age	46 years
Age group
18–44	8 (40)
45–54	8 (40)
55 and older	4 (20)
Gender
Female	14 (70)
Male	6 (30)
Sexual orientation
Straight/heterosexual	16 (80)
Gay or Lesbian	2 (10)
Bisexual	2 (10)
Marital status
Never married	9 (45)
Married	5 (25)
Divorced/separated	6 (30)
Education
High school degree	2 (10)
Some college	7 (35)
College degree or higher	11 (55)
Employment
Unemployed	10 (50)
Full time	6 (30)
Part-time	3 (15)
Retired	1 (5)

Figure 1.

Grounded Theoretical Model for Factors Influencing Perceived COVID-19 Personal Risk and Precautionary COVID-19 Behaviors.

The letters A-L denote the paths between concepts which are described in the results.

Note. Red line indicates that we did not find evidence that participants’ perceived COVID-19 personal risk was influenced by the perceived higher COVID-19 burden in the Black community.

Table 2.

Emergent Themes and Subthemes, Corresponding Paths in the Grounded Theoretical Model, and Illustrative Participant Quotes.

Subthemes	Path	Illustrative quotes
Theme 1 (A): Presence of COVID-19 in social network
The presence of pre-existing health conditions influences levels of perceived personal risk.	A	“I was somewhat concerned because of how bad, because they said that for people with underlying health issues, and I, like I said, I’m diabetic, so I was really like, oh my god, you know, I’ve gotta be overly vigilant, I’ve gotta wash my hands all the time, I’ve gotta cover my face all the time. So, that was my biggest fear I guess I would say.”—Participant 008
		“I’ll say specifically [my perception of risk] changed because I have a underlying health condition that affects my immune system. So I did not come outside for anything for like six months, I’m sure it was six months. And we would joke and say, if they really ever want to find anybody that really followed the, um, the shutdown order truly, they should just talk to us. Because we. . . Um, the, the ailment is hereditary, so my mother has it and my son has asthma. So the three of us were out of commission.”—Participant 010
		“Well, um, I was pretty much just, um, a shut-in because I have all the health issues and so it wasn’t, you know, good for me to be out in the general public.”—Participant 011
Theme 2 (B): Pre-existing health conditions
The presence of COVID in participant social networks influenced levels of perceived personal risk.	B	“Because my, um, my uncle, um, he’s a healthy guy. He ha- he came down with it, and, um, he was in the hospital. And, um, they said he almost died, and. . . He told me this. I talked to him. . .When I finally was able to speak to him when he in the hospital and he said he was doing better, but he was telling me how he, um. . . uh, he was dying-. . . and that he was, was. . . He thought he was gonna die. You know, he felt that bad, you know, hooked up to machines and all that, you know. So, um, I. . . From that point, I knew it was severe, you know, it was pretty serious. But he. . . God. . . By the grace of God, he overcame it, and he’s, um, on his feet now.”—Participant 012
		“I think when I found out my sister had it was when I really took it the most serious. So, um, it just really made me take it a little more seriously and, um, because at that point like I said, I didn’t think it was going to go this far. And then right soon after that, that’s when people here at the medical center started really having a lot of deaths. And so at that point I realized that, um, I’ve gotta start really taking it seriously, um, started ordering masks ‘cause before I just had like a couple masks that I would interchange and I’m like, “No. We need to, uh, order masks off Amazon.”—Participant 017
		“Um, in the beginning, I didn’t take it seriously. Uh, I said, “Okay. You know, this is a hoax,” or something like that. But then, as it went along, then, um, people who, who I knew and loved and they passed away from it, it changed me a little bit. So, it, it woke me up a lot. It woke me up a lot.”—Participant 015
Theme 3 (C–I): Information, leadership, and precautionary behaviors
There was a bidirectional relationship between perceived personal risk and precautionary COVID behaviors.	C	Oh, I was terrified that I would get it. It was something that was very scary. I was- you had to be, you know, extra careful. You couldn’t really interact with anyone. You had to be, um, constantly, you know, washing your hands and since I was also recovering from surgery [. . .] it was very scary for me.”—Participant 011
		“And I was always getting sick, you know, for a week. [. . .] When I’d get a cold, I’d be bedridden all . . . you know, really severe . . . So, um, I just thought that if, um, that if I did [. . .] come down with the virus, it wouldn’t last long. Um, but then I started to hear about people dying and all that, so I just really tried to make sure that, um, I was doing the things they said: mask up, social distancing, not going anywhere, staying away from people as long as I could, you know, that kind of thing.”—Participant 012
The perceived lack of unified messaging and information from government, media, and/or healthcare professionals increased their perceived risk of COVID and overall fears and concerns.	D	“Uh, with, you know. Also, the masks, no masks, you know, no masks, no service. How contagious COVID is, how not. You know, is it airborne? You’re washing your hands. And so, uh, you know, me being afraid for my grandson, because I’m high risk, he’s someone high risk, he suffers from bronchitis. I’m just tying it together for like, uh, the information.”—Participant 013
		“Um, because I was like, “No one seems to know what’s going on. They got us walking around in mask. Don’t touch this. Don’t be amongst people.” It’s like, “I don’t know what’s happening and everything.” So, I was concerned.”—Participant 021
Mistrust was related to the perceived lack of unified or consistent messaging about COVID from the government, media, and/or healthcare professionals.	E	“Having that clinical information, um, even when [Fauci] did, he wasn’t that sure. I didn’t think he should’ve done that. You know, he’s too inconsistent, he has to be more direct and he needed to take more of an aggressive approach. [. . .] You have to protect the general public.”—Participant 013
		Um, in the beginning, I didn’t take it seriously. Uh, I said, “Okay. You know, this is a hoax,” or something like that. . . . And then, all of a sudden, when they start going on, they said, um, it’s mostly to affect the older, you know, the older people. And that was nothing. Okay. I can understand that. Then, they turned around and say, “Well, you have to take certain things [. . .] or certain pills or certain things you couldn’t take.” Okay, that was another thing. And then, um, nobody wasn’t too sure about this vaccination, one shot, two shots. And, oh, then, all of a sudden, they said, okay, [. . .] the research time that was put into this is too short. [. . .] But as it went along, and you heard about it, you’re just saying, “Okay, no.” But the thing that shook me up was how many stories that came out of it. And what do you believe and what do you not believe?”—Participant 015
		“[What] scares me about it is they like, you gotta get one dose, and then, you get full immunity with another dose and stuff. I’m like, “Oh, my god, it’s too complicated.” —Participant 018
Exposure to perceived misinformation was associated with mistrust in the government, the media, and/or healthcare professionals.	F	“Um, I would say every time somebody died, calling it a COVID death. Like, I don’t believe that every single person that died during this pandemic died from COVID. Like, they could have died for something else, but they’re going to like, oh, like let’s push the agenda, let’s say this many people die from COVID. I don’t think anybody fakes a death or anything like that, I’m pretty sure all these people did die, but I don’t believe that every single death that they reported is from COVID. I think it’s being put out there to scare people like, yes, let’s get this vaccine, let’s do this.”—Participant 001
		“Hmm. Um, to be honest, I was actually at work the day that they announced that there’s a pandemic. I was really scared I didn’t know what really caused it. You know, a lot of people have different theories, um, the government caused it you know, like some people feel like the government literally, I don’t know, infected people with COVID and spread the virus themselves. You know, due to like them pushing COVID on the news and the media and stuff. Meanwhile, there’s a whole bunch of other stuff going on that their not covering. Um, personally, I just I didn’t really know. I just knew that it was a really big issue and the president that we had at the time wasn’t gonna do much. I already knew that. I anticipated that. And so, that made my fear even worse.”—Participant 007
		“Um, I probably wouldn’t trust the hospitals. Um, most people that did contract the virus go to the hospital but didn’t come out. We didn’t know what was going on. But, uh, if you just stay clear and if your religious beliefs is there and, uh, you got the shot, let’s say, at a Walgreens or something like that. Or a clinic, urgent care center, um, I think your chances of, your chances of living would be greater than going to the hospital, getting sick by the COVID-19 and surviving that. So I’m not saying that the hospitals was killing people that had the COVID-19 and just writing it off as them having it . . . but something wasn’t there that, uh, didn’t click for me.”—Participant 018
For some, exposure to perceived COVID misinformation influenced precautionary COVID behaviors.	G	“Yeah, I just be listening to everybody, uh, conversations [. . .], saying stuff. I’m just like, “Oh, really? It’s the vaccine? [. . .] It killed a thousand more people? Oh, okay, okay.” I just be listening. Uh, I wanna be around the third batch of people that get it. I watch the news, so I’ll see if people start walking backwards, having seizures, falling out. It ain’t for me.”—Participant 005
		“I mean maybe I’ll change my mind by May cause, um, in May we’re projected to have a vaccine for every adult in the United States. Maybe I’ll change my mind by then, but for right now, I don’t, if it was offered to me today I wouldn’t want it. Well, it’s not like it’s the COVID vaccine specifically. Like, a lot of the vaccines something could happen to you. Like, it might have not been real, but I saw a picture of some people that got a vaccine and like half of their face got paralyzed and that was enough to make me not really want to take part in it.”—Participant 007
Exposure to perceived accurate information influenced personal COVID beliefs and knowledge.	H	“And then of course now with this one [vaccine] being created so quickly, that was just unbelievable that it was gonna work or that it was safe because we don’t know the long-term effects of it, but with all the scientists and people that are in it, and then they were getting vaccinated on TV from the president, vice president elect at the time, um, that gave me confidence that it will be okay.”—Participant 003
		“Uh, I felt 100% comfortable by trying the vaccine. Um, I trust science, I trust my doctor, I trust Dr. Fauci and, um, I, uh, get a flu shot, uh, almost every year. . . Um, I used to be a Dean of Students, uh, at a law school. And I worked in academia for 19 years and I know the flu shot works. Like I would get a flu shot, you know, every year. So when they said, “Oh, we’re getting a vaccine.” You know, the vaccine was coming, I was ready, you know, and I, I was 100%, um, you know, uh, planning on getting the vaccine as soon as I could.”—Participant 014
Exposure to perceived misinformation did not influence personal COVID beliefs and knowledge in so much as most participants acknowledged the existence and prevalence of misinformation but shared that they did not ascribe to such beliefs themselves.	H	“Cause sometimes you’d hear people say, “Oh, um, the flu has killed more than, uh, the COVID,” and uh, and so I always. . . my response to that would be [. . .] first of all, you have to give this particular virus the chance to see what it’s gonna do, you know. So it’s easier to say, yeah, the flu has killed more people, but the flu’s been around for however long it has been. This is just something that just took place within a year and counting now, so. A lot of people, at least people I’ve spoke to, you know, have their own opinions of what may be and is it for real or not, but I wasn’t one. I believed what the experts were saying, and it’s the same to this day. But, you know, I never looked at it in the aspect of, of I think governments are trying to control our population or whatnot. I never looked at it like that, and quite frankly, when it comes to serious situations as such, I never did look at it like that, or um, formulated thought erratically.”—Participant 002
		“I didn’t trust any information that I was getting off the internet or Facebook or any of those places. So I basically relied on what the mayor, governor, and the Illinois public health professional, and some of the stuff from Dr. Fauci and the CDC, basically whatever was on channel 7 or CNN, cause I trust those networks. I relied on that only and nothing off the internet. I didn’t have access to my doctor, so I didn’t get it from them. So basically the news. Well, I had a lot of, uh, things that were flashing up on Facebook and some of the stuff, I just, it was both mace, mainly conspiracy type stuff. And, um, you know, a lot of it was racial slanted against Asian people, which I don’t believe in that. And, um, it was basically blaming them for the reason that the virus was here and, um, some of the information just wasn’t factual. So I didn’t believe in that.”—Participant 003
		“So that you’re not a part of the half a million people that, that had to die. Because, um, political rhetoric from leaders that I don’t support made people think that they were not in harm’s way when they were or made people think that were safe when they weren’t. Um, I have a couple of friends who I think highly of otherwise who said, ”Nah, I don’t think I’m gonna get that.” And I’m thinking, “Did you hear about polio? I mean, go get the vaccination.” This doesn’t have to happen. But I’m learning also to take care of my family in my house and, um, be not judgmental, but you know, not be so brash about these kinds of decisions because [. . .] it’s a new decision, you know, and people gotta make it for themselves I guess. So I don’t know that they’re going to just target you when everybody in the whole nation’s gotta get vaccination, right. Um, it’s not a small independent study or let’s see of syphilis really kills black men or people. Yeah. It’s not that right now. That’s not this. Um, you always have to be vigilant but it’s a pandemic. Pan P-A-N. That’s going all around the whole world.”—Participant 010
COVID beliefs and knowledge led to uptake in precautionary COVID behaviors.	I	“Uh, I believe it’s, um, I believe it’s okay to take because there really is no alternative and I feel like it’s something that, uh, everyone should do in order to not only protect themselves, but to protect others. There’s, uh, no other way to, uh, protect yourself. Or other people, um, spreading or continuing to spread the coronavirus unless you get, um, uh, vaccinated. Well, I hope it’s effective, but I think the reports that are coming out say something about, um, 90%, things like that. To me, it means that it’s not perfect, but it’s well enough. Uh, I think it’s safe. I have taken it, so.”—Participant 011
		“[The vaccine] is safe. I haven’t had any side effects and I had it for a couple of months now. [. . .] And, uh, I recommend it. Very effective. [. . .] I think you, you’re due for a second time around just to refresh some things up in your system I believe in about a year or so. I’ll go ahead and take that again but, um, yeah, it’s effective, it’s safe, no side effects.”—Participant 018
Theme 4 (J–M): Societal burden, racism, and barriers effecting perceived COVID burden in the Black community
Institutional racism created structural barriers to access to COVID-related services, products, healthcare, and so on, which in turn presented as a perceived higher COVID burden in the Black community.	J	“[COVID] is worse [for the Black community], because, uh, I see a lot more deaths reported in the Black community and um, I see a lot more people in the Black community without jobs. And then the Black community, they’re less likely to be vaccinated. Some of it is cause they don’t want to [. . .] And then, um, [the vaccine] is just not widely available in the Black community. Like, you see on the news, a lot of white people have access to it or it seems like it’s easier for them to get it. And I don’t wanna sound like it’s a race war or something, but that’s just how I see it.”—Participant 003
		“Oh, man. Well, obviously, our numbers were up compared to other groups as far as people that was getting sick with the virus. And, of course, I think, with anything, whether it’s housing, healthcare, whatever, we become second class when it, you know, when it comes to looking out for us. Yeah, our community always is second, comes second or third behind the majority. [. . .] people of color come second when it comes to health, hospitalization, healthcare, everything.”—Participant 012
		“I question, you know, how many Black folks were able to, you know, maybe get a test. You know, was the testing close enough, you know, to their home right? Now, the vaccine is available in more neighborhoods. But honestly when it first came out at the United Center, okay, well, the United Center is not around the corner from everyone. Yeah, it’s around the corner from those people that live on the west side. But what about people that live on the far south side? Right. They put it there first and then it took weeks, you know, for them to get it over here to, you know, Chicago state right? Which is the whole, you know, south side community, right? So where were those people supposed to go to, you know, get the test?”—Participant 014
		“One of the ways I think it is because of our history with being oppressed and being misused or whatever, or being experimented on, that definitely put in some extra stress with this happening, especially with the vaccine. I definitely get why we were so afraid or opposed or whatever to get it because of our history because of the way we have been treated.”—Participant 017
		“Because people didn’t believe in the pandemic because it, it was hard for people to believe in going to get [. . .] the vaccine and, due to our past history [with the Tuskegee experiment]. So, and things was harder to get to for us. So. . . The vaccine and getting tested was harder to, we already have our bus routes cut and, you know [. . .] in our neighborhood, hospitals and everything is starting to close down. So you have to just spend, people don’t have cars. Some people don’t have, you know, have various ways of getting to it. So, yeah, it’s harder.”—Participant 022
Institutional barriers exposed by COVID had non-health-related consequences for the Black community. Non-health-related consequences contributed to higher perceived COVID burden in the Black community.	K	“You know, a lot of our, a lot of black children are falling behind because of this pandemic in their education. They, some of the kids that, when the schools shut down and they really haven’t opened back up yet, some children didn’t have access to the internet, so they weren’t able to take their classes at home and, you know, [. . .] or they didn’t have a computer to use to be able to take their classes. So, you know, they missed out on a lot because of that alone. And even though some of them were given computers and some of them were given access to free internet or low-cost internet, it still, you know, the parents weren’t there to really, you know, help them along, you know, to keep them on track. So, they are falling behind. [. . .] and I think that happened with a lot of people, that the kids were not able to keep up for whatever reason, reason it was because they didn’t have the internet or didn’t have a computer of didn’t have anyone to check what they were doing, all of that. So, it’s like, a lot of kids are gonna be, are getting left behind right now.”—Participant 008
		“So some, you know, there are quite a few Black folks that don’t travel outside of their neighborhoods, don’t have cars, you know, [. . .] and don’t want to get on two or three buses to get a test, to get the vaccine, you know. [. . .] Um, you know, but my best guess is that some Black people lost their job. [. . .] and, and that’s huge. And then obviously that would affect you being able to pay your bills and pay your rent, and you know, all this other you know, good stuff or whatever. Now you’re facing eviction and you know, how does that work?”—Participant 014
Non-health-related consequences contributed to higher perceived COVID burden in the Black community.		Worse, because, uh, I see a lot more deaths reported in the black community and um, I see a lot more people in the black community without jobs. And then the black community, they’re less likely to be vaccinated. Some of it is cause they don’t want to because they’re not (silence). And then, um, it’s just not widely available in the black community. Like, you see on the news, a lot of white people have access to it or it seems like it’s easier for them to get it. And I don’t wanna sound like it’s a race war or something, but that’s just how I see it. – Participant 003
Perceived existing health and social disparities in the African American community were related to perceived higher COVID burden in the Black community.	L	“Oh, [Black people] have been. . . disproportionately [affected by COVID]. Yeah, yeah, yeah, they’ve been affected heavily. Because lot of people lost their jobs. If you’re low income, or not low income but you have, you know, you get laid off and, you know, you work in a restaurant or retail, those businesses have closed. I mean, not closed, but temporary. Yes. If you’re in the bottom of the economic realm, you know. . .”—Participant 006
		“And especially, um, uh, seemed to really hard the African American community. [The] Black community has, uh, really bared most of the brunt of the disease because of the, uh, inherent underlying health problems that we have, meaning the, um, uh, blood pressure, high cholesterol, diabetes, heart disease. And, um, a lot of us don’t really go to the doctor on a regular basis as we should. Some of it is fear. Others, for others it’s a sensibility. You know, for various reasons, it has hit our race a lot harder than other races. I think economically as well ‘cause a lot of Black neighborhoods really suffer poverty or being the working-class poor. And because of the pandemic, a lot of people who work in a lot of those fields are Black, you know, Black people. Like food services and, you know, like restaurants, the travel industry.” –– Participant 011

Note. CDC = Centers for Disease Control and Prevention; CNN = The Cable News Network.

Theme 1: Pre-Existing Health Conditions (Path A)

Pre-existing health conditions appeared to be positively related to perceived personal risk, such that participants with pre-existing health conditions frequently associated their health status with a perceived increase in personal COVID-19 risk. This theme did not have any associated subthemes.

Theme 2: Presence of COVID-19 Infection in Participant Social Network (Path B)

For many participants, the presence of COVID-19 infections in their social networks led to an increase in their own perceived personal risk. The pandemic did not appear to be a perceived threat until individuals known to the participant were infected and/or passed away from the virus. This theme did not have any associated subthemes.

Theme 3: COVID-19-Related Information, Participant Trust and Perceived Personal Risk (Paths C–I)

Exposure to COVID-19-related information, perceptions of a lack of uniformity and consistency in the presentation of COVID-19 information, and mistrust of public health professionals and establishments, government entities, media and news sources, and medical professionals were all related to the uptake of precautionary COVID-19-related behaviors and perceived personal risk. This theme had several interrelated subthemes. A bidirectional relationship existed between perceived personal risk and the uptake of precautionary COVID-19-related behaviors including masking, social distancing, vaccination, hand washing, sanitizer use, and isolation/quarantining (Path C). Despite most of the sample engaging in precautionary behaviors, many participants felt there was a lack of unity and clarity in the messaging around COVID-19 from the government, news media, and medical/public health professionals. For many participants, this confusion directly influenced their perceived personal risk (Path D). This lack of unified messaging was bidirectionally related to feelings of mistrust in public health establishments, the government, news media, and medical professionals to varying degrees (Path E). Relatedly, exposure to both accurate and inaccurate information was also bidirectionally related to mistrust in public health establishments, the government, news media, and medical professionals (Path F). Many participants acknowledged their awareness of perceived accurate versus inaccurate information and chose to distance themselves from belief in anything they perceived as misinformation. Exposure to information directly influenced the uptake of precautionary behaviors for most participants (Path G). Exposure to both accurate and inaccurate information influenced participant COVID-19 beliefs and knowledge in various ways (Path H). For example, some participants reported exposure to information via social media or individuals in their social network and acknowledged that they were not confident in the accuracy of the information. While some participants acknowledged the proliferation of conspiracy theories around the pandemic, some expressly distanced themselves from these theories and others stated that they were unsure what was true or whom to trust. Some participants stated that they intentionally sought out information from places they deemed reliable including the CDC and government officials. COVID-19 beliefs and knowledge, expectedly influenced participants’ uptake of precautionary behaviors (Path I).

Theme 4: Perceived Higher Burden of COVID-19 in the Black Community (Paths J–M)

Most participants held the belief that there was a perceived higher COVID-19 burden within the Black community, overall. This burden was influenced by perceived disparities in the Black community compared with other racial/ethnic communities, in terms of infection rates, hospitalizations, and deaths as well as institutional racism which created structural barriers to access treatment and COVID-19-related socioeconomic resources. However, most participants did not demonstrate a link between their perceptions of higher COVID-19 burden in the Black community and their own individual perceived personal risk. Within this broader theme, there are several subthemes. Most participants tied institutional racism against the Black community to structural barriers to accessing COVID-related services, supplies, and resources, which lead to negative non-health-related consequences for the Black community including job loss and financial strain, poor schooling for children, and challenges with transportation (Path J). These COVID-related consequences contributed to greater perceived COVID-related burden within the Black community overall, especially when compared with other racial/ethnic groups (Path K). In addition to barriers to accessing services and associated institutional racism, participants identified perceived existing disparities between the Black community and other groups specifically with regards to knowledge and understanding of COVID-19 as well as epidemiological rates in the Black community (Path L).

Discussion

In this study, we used a grounded theory approach to understand how perceptions of personal COVID-19 risk were related to precautionary behaviors. Our grounded theoretical framework identified four main themes and 13 subthemes. The four main themes focused on pre-existing health conditions (Theme 1), the effects of COVID-19 on social networks (Theme 2), exposure to COVID-related information, the effects of perceived inconsistent messaging from public health and government officials, and mistrust of public health establishments, government, media, and/or medical professionals (Theme 3) and finally, the perceived effects of racial disparities, structural and systemic racism, and perceived COVID-19 burden on the Black community’s experiences of the pandemic (Theme 4).

The disproportionately high COVID-19 burden in Black communities did not seem to directly influence personal perceptions of risk in our sample. Participants did not state that their perceptions of a higher COVID-19 burden in the Black community influenced their own perceived personal risk related to COVID-19, often referring to the Black community in othering language such as “they” or “the Black community” and not with inclusive language such as “we.” Rather, infections and deaths in participants’ social network and having a pre-existing health condition more effectively shaped their risk perceptions and subsequent adherence to precautionary behaviors (e.g., mask wearing and vaccine uptake). This observation is consistent with a recent survey showing that U.S. adults make vaccination-related decisions based on individual perceptions of risk rather than “population threat of infection” (Mercadante & Law, 2021). In turn, individual risk perceptions tend to originate from personal experiences; findings from a recent study emphasized that awareness of COVID-19 cases among one’s immediate family members was associated with engagement in precautionary behaviors (Li et al., 2020). Relatedly, an analysis conducted after the 2009/2010 H1N1 pandemic revealed that health-related communications within social networks were positively correlated with the adoption of precautionary behaviors (Lin et al., 2018). Taken together, these findings suggest that a generalized COVID-19 risk communication may not achieve its intended purpose. Instead, localized messaging that focuses on specific social environments may be better suited to convey the magnitude of risk.

The historical and contemporary contexts of systemic racism and subsequent mistrust in public health institutions were related to personal risk perceptions of COVID-19. This mistrust has potentially deepened because of inconsistent health messaging, direct attacks on public health institutions by prominent politicians, and the viral spread of misinformation on social media. It is therefore unsurprising that the American public’s confidence in medical science has declined since the beginning of the pandemic, according to a recent Pew survey (Kennedy et al., 2022). Among Black individuals, 28% said they have “a great deal of confidence in medical scientists to act in the public’s best interests” in December 2021, down from 33% in November 2020. These findings align with evidence that Black Americans’ beliefs about COVID-19 were shaped by a perception of implicit bias within health care, long-standing racists practices within the scientific and medical field, conflicting guidance at different levels of government, and a paucity of trusted messengers (Bateman et al., 2021; Carson et al., 2021; Momplaisir et al., 2021; Ordaz-Johnson et al., 2020). While our findings did not unequivocally link mistrust to less uptake of precautionary behaviors, other studies demonstrated a relationship between mistrust and willingness to take the COVID-19 vaccine (Momplaisir et al., 2021). Trust in government and government-led responses are crucial in a crisis situation, wherein adherence to official guidance is key to stemming the spread of a novel virus. In the long-term, authentic reflection and deliberate action around the fundamental causes of mistrust among Black communities are prerequisites to an effective emergency response (Dada et al., 2022). More immediate actions include identifying and empowering trusted entities and messengers within local communities to disseminate scientific evidence and guidance; these may include Black physicians, community organizations, faith-based leaders, and barbershops (Berenbrok et al., 2021; Dada et al., 2022).

In addition to mistrust, some participants noted structural barriers to accessing COVID-19 testing and vaccination resources, which may hinder uptake of precautionary behaviors despite accurate knowledge and motivation. Other studies have also found that the location of testing and vaccination sites and associated financial costs presented barriers to access among Black individuals (Bateman et al., 2021; Callaghan et al., 2021). More structurally, COVID-19 vaccine “deserts” have been identified in areas where Black residents live far from medical health centers and have to drive further distances to reach vaccination facilities compared to Whites (Dada et al., 2022; PittWire, 2021). These findings emphasize the importance of understanding the local environmental context and combining health communications strategies with access-enhancing interventions. Non-traditional vaccination strategies have been deployed as alternatives to serve hard-to-reach populations, such as converting parking lots, community centers, businesses, faith-based organizations, and schools or using pop-up or mobile sites (e.g., vans and ambulances) (Dada et al., 2022). The ability to quickly adapt to emergent needs requires a sustained commitment to establish relationships between localities and community organizations and groups to collaboratively identify novel approaches to combat this and future pandemics.

Strengths and Limitations

We used grounded theory methodology to propose multiple pathways that can influence risk perceptions and precautionary behaviors among Black individuals during the unprecedented COVID-19 pandemic context. We interviewed participants from different age groups, genders, income levels, and community engagement to ensure a diversity of perspectives and lived experiences. Our study has several limitations. First, participation in our study required access to the internet and the ability to connect to Zoom, which may have excluded individuals with digital access and literacy barriers. The study team provided specific instructions to all participants on how to connect to the Zoom platform and made every effort to offer troubleshooting support when possible while also allowing for phone interviews. Second, social desirability bias may have affected participants’ accounts. For example, although participants evoked COVID-19 misinformation unprompted, they frequently distanced themselves from this misinformation by assuring the interviewers that they did not buy into this narrative. This pattern may hint at possible social desirability bias, given that participants recognized that the interviewers worked in public health research. Third, our sample has overall higher educational attainment than the average Black Chicagoan; this could explain the relatively attenuated reports of challenges experienced during the COVID-19 pandemic.

Public Health Implication: Relevance to Public Health Emergency Response

Our findings suggest that Black adults’ perceptions of their individual risk and precautionary behaviors were not always congruent with public health data and recommendations. Therefore, COVID-19 messaging and mitigation strategies should be informed by (a) local community engagement and (b) transparent communication. First, a one-size-fits-all approach to public health interventions failed to reach disproportionally affected and marginalized communities. Community engagement and community-driven interventions and public health campaigns should be prioritized to understand local contexts and needs, and jointly develop with community partners–targeted interventions that are acceptable and feasible. This strategy aligns with recommendations for COVID-19 vaccine equity generated through focus groups with participants of diverse racial/ethnic backgrounds, including Black Americans. Participants recommended investing in community engagement and community-centered actions that leverage trusted messengers from within each community (Carson et al., 2021). Relatedly, national funding efforts have promoted community-engaged strategies to address COVID-19 disparities (National Institutes of Health, 2021, 2022); these projects should be the bedrock for sustained community partnerships and emergency preparedness.

Second, the COVID-19 pandemic was an unprecedented public health emergency, at least in recent history, both in terms of its novelty and spread. Public health information and messaging were constantly refined to reflect emerging data and knowledge. This iterative process of building scientific evidence may seem familiar to and even expected by health and medical professionals, but it caused public disarray and growing mistrust in health agencies. The public had an extraordinary exposure to the scientific method, which should have been coupled with broad education about how science typically unfolds (e.g., why recommendations change over time). Transparent communication about the scientific process and rationale for decision-making should be prioritized in subsequent health emergencies. Coupling these two recommendations for local action and transparent communication may generate the optimal environment for fostering and maintaining trust between communities and the medical and public health entities.