Vaccine perceptions among Black adults with long COVID

Abstract

Objectives:

Low uptake of COVID vaccines within Black communities is a concern given the stark racial inequities associated with the pandemic. Prior research details COVID vaccine perceptions within the general population and Black communities specifically. However, Black individuals with long COVID may be more or less receptive to future COVID vaccination than their peers without long COVID. The impact of COVID vaccination on long COVID symptoms is still controversial, since some studies suggest that vaccination can improve long COVID symptoms, whereas other studies report no significant change in symptoms or a worsening of symptoms. In this study, we aimed to characterize the factors influencing perceptions of COVID vaccines among Black adults with long COVID to inform future vaccine-related policies and interventions.

Design:

We conducted 15 semi-structured, race-concordant interviews over Zoom with adults who reported physical or mental health symptoms that lingered for a month or more after acute COVID infection. We transcribed and anonymized the interviews and implemented inductive, thematic analysis to identify factors influencing COVID vaccine perceptions and the vaccine decision-making process.

Results:

We identified 5 themes that influenced vaccine perceptions: (1) Vaccine safety and efficacy; (2) Social implications of vaccination status; (3) Navigating and interpreting vaccine-related information; (4) Possibility of abuse and exploitation by the government and scientific community; and (5) Long COVID status. Safety concerns were amplified by long COVID status and mistrust in social systems due to mistreatment of the Black community.

Conclusions:

Among the factors influencing COVID vaccine perceptions, participants reported a desire to avoid reinfection and a negative immune response. As COVID reinfection and long COVID become more common, achieving adequate uptake of COVID vaccines and boosters may require approaches that are tailored in partnership with the long COVID patient community.

INTRODUCTION

COVID-19, an infectious disease caused by SARS-CoV-2, was declared a pandemic by the World Health Organization on March 11, 2020 (World Health Organization 2020). COVID infection can lead to the onset of chronic symptoms like severe fatigue, widespread joint pain, dyspnea, cognitive dysfunction, cardiovascular problems, sleep problems, and anosmia that can last for weeks, months, or longer (Sudre et al. 2021). These post-acute COVID sequelae are known as long COVID, PASC (i.e., post-acute sequelae SARS-CoV-2 infection), and long haulers syndrome (Herrera et al. 2021). Vaccines are helpful for preventing serious complications from infection, such as the need for hospitalization and the development of long COVID (Noor 2021). Vaccine efficacy relies on herd immunity, or a high proportion of the population being vaccinated (Plans-Rubió 2022). However, vaccine uptake lags in the United States of America (USA) and is inequitably distributed (Ritchie et al. 2020). The experience of having long COVID can also impact patient perceptions of the COVID vaccine due to a lack of consensus on whether the vaccine can improve or worsen long COVID symptoms (Arnold et al. 2021; Katella 2022; Strain et al. 2022).

Overall, 31.46% of the USA population has received 2 doses plus booster of one of the vaccines approved for emergency use as of June 2022 (CDC 2022), ranging from 17% in North Carolina to 50% in Vermont. Initially, it was estimated that 67% of the population needs to be vaccinated to achieve herd immunity (Randolph and Barreiro 2020). Currently, an estimated 80–90% of the population must be vaccinated to achieve herd immunity, and it is possible that COVID vaccine boosters will be recommended for years to come (Plans-Rubió 2022). Vaccine rates vary by urbanicity, where roughly 75% of those living in urban areas are vaccinated whereas 59% of those living in rural areas are vaccinated (Saelee 2022), and by race/ethnicity. White people account for a majority of those who are unvaccinated (64%). Furthermore, the proportion of those who have received at least one dose is lower for both White and Black people (63% and 57%, respectively) relative to Asian and Hispanic/Latinx people (85% and 65%, respectively) (Ndugga et al. 2022).

Low vaccine uptake within Black communities is a concern given the stark racial inequities associated with the pandemic. In the U.S., the health and economic consequences of the COVID pandemic disproportionately affect Black households relative to White households (Mackey et al. 2021). Fifteen cohort and cross-sectional studies that compared risk for positive SARS-CoV-2 PCR test among Black and White populations consistently detected a disparity and estimated that Black and African American populations had a 1.5 times to 3.5 times higher infection risk than White populations (Mackey et al. 2021). Racial inequities in long COVID are also likely since Black patients have a greater risk of infection and severe illness from acute COVID (Shah, Sachdeva, and Dodiuk-Gad 2020), which are risk factors for long COVID (Sudre et al. 2021).

The reason for these inequities is complex and can be partly attributed to social determinants of health (SDOH) and systemic racism. SDOH refer to the conditions in which people live and work that shape their health outcomes and well-being (Braveman and Gottlieb 2014). When it comes to social determinants like housing quality, poverty, and education access and quality, people of color often face a disadvantage when compared to White people. The inequitable distribution of resources and economic opportunities is also influenced by systemic racism, which refers to the racism present in laws, policies, and regulations of institutions and societal organizations (Paradies 2006). Systemic racism is relevant to the COVID pandemic in multiple ways. For example, redlining has led to racially segregated housing, housing insecurity, and inadequate investment in neighborhoods with large minority populations, making it difficult for people in these areas to attain access to healthy food and safe and clean living and exercise space. Due to systemic racism, Black Americans are overly represented in jobs requiring both travel and interaction with the public, are more likely to live in crowded housing, and are more likely to have reduced access to healthcare, including vaccines and vaccine-related information (Millett et al. 2020). Eugenics theory and unjust medical experimentation on Black people without their consent has led to ongoing clinician bias and a justified lack of trust in the healthcare system (Golden, Joseph, and Hill-Briggs 2021). Longstanding racial inequities in policies, social conditions, and healthcare contribute to higher rates of disease such as hypertension, obesity, diabetes, and cardiovascular disease in Black communities relative to White communities (Golden, Joseph, and Hill-Briggs 2021). These conditions increase the risk of COVID-related complications, including mortality (Sudre et al. 2021). Additionally, when seeking care for COVID or long COVID, Black patients are more likely to be discharged prematurely or dismissed when describing their symptoms due to prejudice, implicit bias, and discrimination by healthcare staff that impacts clinical decision-making (Dehon et al. 2017). Characterizing vaccine perceptions and the factors that influence them can inform public health policies and approaches for improving vaccine uptake. Thus far, over 60 studies conducted primarily in the USA and the United Kingdom focus on COVID vaccine perceptions within the general population and among Black people specifically. For example, a rapid national assessment study in the USA that surveyed 1,878 adults before the widespread dissemination of COVID vaccines reported that just 52% of participants were “very likely” to receive the vaccine (Khubchandani et al. 2021). The assessment found vaccine hesitancy to be highest among African American and Hispanic people, individuals with lower education and lower incomes, those from rural areas or with children at home, people in the northeastern USA, and Republicans (Khubchandani et al. 2021). To date, 24 studies report COVID vaccine perceptions among Black and African American adults in the USA. In addition to concerns about vaccine safety and efficacy, Black adults also express how historical events influence their hesitancy towards COVID vaccines. For example, vaccine resistance due to conflicting religious beliefs, misinformation, and medical and political mistrust was a core theme that influenced vaccine perceptions in a sample of Black Americans prior to the approval of COVID vaccines for emergency use.” In Southeast Michigan, an online survey with 1,025 participants found that only 40% of Black respondents were vaccinated compared to 57% of White respondents, and that concerns over safety, efficacy, occupation, and access were responsible for low vaccine uptake in Black respondents (Taylor, Sarathchandra, and Kessler 2022). As we enter a new phase of the pandemic where reinfection is increasingly common and the incidence of long COVID grows (Sudre et al. 2021), understanding vaccine perceptions in patients with long COVID could provide novel insight when developing vaccine campaigns for the long term. The ways in which having long COVID can impact one’s perceptions of the COVID vaccine and one’s receptivity to future COVID vaccination is an understudied area of research. Black individuals with long COVID may be more or less receptive to future COVID vaccination than their peers without long COVID. Tailored public health interventions are becoming increasingly valued to improve intervention access and acceptability, especially within marginalized communities. Blanket policies that are uniformly distributed can often be less effective or backfire and worsen health inequities (Trappenburg et al. 2013). In this study, we aimed to identify factors that influenced vaccine perceptions among Black adults with long COVID in 2021, with a focus on Michigan residents. While it is possible for vaccine hesitancy to change within a person over the course of the pandemic, the reasons for vaccine hesitancy within communities likely remained consistent. Therefore, understanding COVID vaccine perceptions in 2021 may be key to increasing vaccine uptake.

MATERIALS AND METHODS

This qualitative study is part of a larger research program on long COVID among Black Americans that includes semi-structured interviews and focus groups. Data from the focus groups, which we conducted following the semi-structured interviews, helped us develop a freely available, web-based resource that supports long COVID management (www.PASCguide.com) and that prioritizes the perspectives of people with long COVID from Black communities. The semi-structured interviews supported the aims of this study as well as separate studies that address opportunities to improve long COVID care (Bergmans et al. 2022) and the experience of having long COVID. This study was approved by the University of Michigan Institutional Review Board.

Reflexivity

When initiating this study, our preconceptions were that 1) historical injustices and ongoing bias, prejudice, and racism in the USA healthcare system contribute to low vaccine uptake in Black communities, and 2) patients with complex conditions such as long COVID may be more or less likely to get vaccinated for acute COVID due to their health status and persistent symptoms. These preconceptions informed the scope of our literature review, development of the interview guide, and interviewer prompts. During analysis, we paid particular attention to the social factors that could influence vaccine uptake.

Eligibility and recruitment

Interviews were conducted between May and September 2021. Eligible participants were adults aged 18 or older who self-identified as African American or Black, reported acute COVID infection, and had lingering physical or mental health symptoms that persisted for at least 1 month after infection. Supplemental Table 1 includes additional information on eligibility criteria. To increase reach, we recruited participants using Facebook flyers; a recruitment website that is affiliated with a medical research center; and word of mouth. K.C-P. contacted those who expressed interest via phone or email to explain the project in more detail and to obtain informed consent before scheduling the recorded interviews.

Interviews

Three authors (R.S.B., K. C-P., M.D.) developed the semi-structured interview guide that asked participants about their experiences with long COVID, factors that influenced symptom management, and COVID vaccine perceptions (Table 1). K.C-P. conducted the race-concordant interviews remotely using a HIPAA compliant Zoom platform. Participants joined the recorded interview via telephone, computer, tablet, or similar device based on their preference, and could choose to turn their camera on or off depending on their comfort level. The interview guide (Table 1) included open-ended questions that asked about lingering physical or mental health effects from COVID, aspects of life that made it harder or easier to manage long COVID symptoms, and the vaccine decision-making process. After data collection, we transcribed the interviews verbatim and anonymized personal identifiers such as names and addresses. Additionally, a summary statement was recorded after each interview. The interviews lasted 54 minutes on average. During data collection, we monitored data saturation using Excel (Microsoft Office 365, 2021) to record the types of long COVID symptoms that participants reported. For each of these symptoms, we assessed the scope of participant responses related to (a) the impact of symptoms on quality of life; (b) the intersection of symptoms with interpersonal relationships; and (c) clinical and self-directed treatment. Using this information, we reached data saturation after 13 interviews. Participants did not review the interview transcripts or summaries.

Table 1.

Semi-structured interview guide

1. Tell me about your experience with COVID-19.

2. Do you have any lingering physical or mental health effects from COVID-19? Tell me about it/them.

3. Are there any other physical or mental health effects that you attribute to being infected with COVID-19?

4. I’m going to ask about aspects of life that may have made it harder or helped you deal with these symptoms.

a. Starting with harder, what aspects of your life do you think have made it harder to deal with these symptoms? How so?

b. Now let’s talk about what has made it easier. What aspects of your life have helped or made it easier to deal with these symptoms? How so?

5. What are your thoughts about the COVID-19 vaccine?

6. Have you had the vaccine, or do you plan to get it?

a. If yes: Why did you decide to get it?

b. If no: Why did you decide not to get it?

7. Is there anything else you would like to add about your experience with COVID-19?

Analyses

We analyzed the data with Microsoft Office Suite and MAXQDA qualitative data analysis software (VERBI Software, 2021) using an inductive, thematic approach (Maietta et al. 2021). As a first step, three authors (S.D., D.A., R.B.) read each transcript to extract quote segments related to vaccines and factors that influenced vaccine perceptions, and then developed meaningful categories within participants. Next, four authors (S.D., D.A., R.B., R.S.B.) compared quote categories across participants and identified five main themes, which all authors reviewed and finalized. Finally, three authors (S.D., D.A., R.B.) applied the coding scheme to ensure that we captured all relevant quote segments in our theme development.

RESULTS

Sample Characteristics

We conducted 15 race-concordant, semi-structured interviews between May and September 2021. Figure 1 indicates when participants were interviewed in relation to when the USA Food and Drug Association granted approval to use the COVID vaccines for emergency use for different age groups. Eighty percent of participants were female and 76% resided in Michigan. The mean participant age was 39 years. All but one participant received their acute COVID diagnosis via nasal swab. Participants exhibited a range of long COVID symptoms including fatigue, shortness of breath, joint pain, swollen joints, muscle weakness, anosmia, insomnia, depression, anxiety paresthesia, memory problems, and concentration problems. On average, we interviewed participants 10 months after their acute COVID diagnosis. Nine participants received the vaccine and 6 did not. Boosters were not yet available at the time of data collection, therefore vaccination status was defined as having an initial COVID vaccine dose (e.g., 2 shots of the Pfizer or Moderna vaccine and 1 shot of the Johnson & Johnson vaccine). Two participants talked about educating the public about the vaccine, both formally (‘I worked on a couple of campaigns for this church in Ohio. Same thing, trying to get the community vaccinated, at least comfortable with the idea.’ - P2) and informally (‘I’ve spent time talking to people about the different vaccines, how they’re produced, what they can do for you, how they can affect you, the good and the bad, and telling them to just pray on it and make the best decision for themselves. You can’t follow the group on this one.’ - P3). Table 2 provides additional participant characteristics.

Figure 1.

A timeline of study interviews relative to vaccine development in the USA.

FDA = USA Food and Drug Administration; EUA = Emergency use authorization.

Table 2.

Participant characteristics

Respondent	Gender	Age range (years)	State of Residence	Months since acute COVID onset	Hospitalized for COVID	Vaccinated
1	F	60–65	Michigan	15	No	Yes
2	M	50–54	Michigan	4	Yes	No
3	F	55–59	Michigan	6	No	Yes
4	F	45–49	Illinois	15	No	Yes
5	F	55–59	Michigan	13	Yes	No
6	F	30–34	Michigan	14	No	Yes
7	F	20–24	Michigan	5	No	No
8	M	20–24	South Carolina	5	No	No
9	F	25–29	Michigan	15	No	No
10	F	25–29	Michigan	10	No	Yes
11	F	30–34	Louisiana	19	Yes	Yes
12	F	20–24	Michigan	16	No	Yes
13	F	30–34	Michigan	9	No	No
14	F	40–44	Michigan	2	Yes	Yes
15	M	55–59	Georgia	13	Yes	Yes

Thematic Results

We identified five main themes for factors that influenced vaccine perceptions among participants in this study (Table 3): 1) Vaccine safety and efficacy; 2) Social implications of vaccination status; 3) Navigating and interpreting vaccine-related information; 4) Possibility of abuse and exploitation by the government and scientific community; and 5) Long COVID status.

Table 3.

Five main themes concerning perceptions of the COVID vaccine

Theme	Examples	Representative quotations
1. Perceived vaccine safety and efficacy to protect self and others in the community.	a. Safety	• The anxiety that comes with the vaccine. Like I heard if the vaccine kills us, our life insurance isn’t gonna be there, so I be stressing about that. (P6) • I am not a advocate for the [COVID] vaccination, just simply because of the way it was developed. [A vaccine with] mRNA is a new concept. // Who knows what the messenger RNA is going to do because they’ve never produced vaccines with this. So I was hesitant for that reason. (P3)
	b. Efficacy	• So I’m like okay, if this helps and gets us back to a semblance of normalcy. It makes sense. (P1) • We got the [vaccine], my husband and I, because he works out at the park so he’s out there every day and I was like, I can’t go through another summer with you going out there doing God knows what. We went and got vaccinated together. So I’m still working from home but he’s out every day, so yeah, we got vaccinated in April. (P3) • I was fully vaccinated when I got [infected with COVID] because my immune system is suppressed. I knew I didn’t have as much protection as someone that was healthy. But I got vaccinated just to get some kind of protection. I’m all for vaccines. I’m all for masks. (P14)
2. Social implications of vaccination status.	a. Social tension	• In the beginning we just really cut off seeing younger family members because they weren’t really being as cautious as we wanted them to be. So now what we’re learning is, in our village, some people just don’t want to get the vaccine. (P1) • I’ve spent time talking to people about the different vaccines, how they’re produced, what they can do for you, how they can affect you, the good and the bad, and telling them to just pray on it and make the best decision for themselves. You can’t follow the group on this one. (P3) • I have a family member who’s in the military. He’s constantly posting [on social media] all this stuff about why you shouldn’t [get] the vaccine, what’s in it, and I’m like, dude. (P2)
	b. Political affiliation	• I don’t think it’s the media’s fault. I think that people are so political about [the vaccine]. Now that we’re not fighting over what president we support, a new thing we want to fight over is whether we’re vaccinated or not. // And I really don’t get it because those that oppose [the vaccine] for their political reasons, all those politicians that they’re supporting, they’re vaccinated. (P14)
	c. Social media influence	• So if something as violent as COVID is going on, how’s the information getting to us? Because if we all get our news and media from Instagram and Facebook and through memes, [if that] is how we get our information, how is something so critical to our livelihood going to affect us [when] we need to do something [like get vaccinated?] (P2)
3. Navigating and interpreting vaccine-related information.	a. Inconsistent vaccine-related information from authorities	• I’ve been told by five healthcare people: my doctor, the nurse practitioner, the nurse, and two other doctors, [to wait] three months [before receiving the vaccine]. But then I hear other people going to take it right away, or 14 days after [getting infected with COVID], so it’s just so confusing. (P5) • A friend and I drove an hour each way to go and get the vaccine and we signed up as long-term healthcare facility workers or long-term housing workers because we work in a dorm. But [our employer] was being very iffy as to expressing when [they] would get us the vaccine and if we would have priority. (P12)
	b. Individual burden to weigh the pros and cons of vaccination	• We all have the sense that God gave us, and we have to make an informed decision, and so for me, my thought process was, “what can I do to protect myself as much as I can?” And you have to look at the scales and weigh [the risks of] getting the disease again and not knowing how it’s going to affect you because it does different things and it mutates. [You need to do] everything in your ability to protect yourself, which is getting a vaccination. And so, um, so I chose to do that. (P3)
4. Possibility of abuse and exploitation by the government and the scientific community.	a. Present-day mistrust in social systems	• But in our community, a lot of people don’t trust the government. I’ve heard the shot has got nano bits in it or nano pirates [for] tracking. It’s just a litany of stuff. (P1) • We think more of ourselves than we ought to in certain cases … when we think there’s a conspiracy against us. (P2)
	b. Historical abuse and exploitation of Black and African American communities	• We don’t act and do things [like worry about what is being put in our food] with the same vigilance as we do [with the vaccine]. You can’t even spell Tuskegee but you’re talking about the [vaccine] experiment. (P2) • There are a lot of theories out there on how COVID came about [that] are going through our community, and I can’t say more so than non-Black communities. But I think it’s built upon the lack of trust [in] science and medicine. You pile that on top of the deception and the lies that the African American community have been told. The way we’ve been treated and so it’s easier to have those conspiracies flow in our community. (P3)
5. Long COVID status.	a. The desire to receive the vaccine to avoid reinfection with acute COVID	• I’ve talked to a number of church members about getting vaccinated. And they’re like, ‘No, I think I’m going to wait,’ and I was like, ‘COVID waits for no one.’ (P3) • Well I’m considering [getting vaccinated] a lot more strongly than I had before getting the virus, I will say that … I’m leaning that way. (P5) • I thought [the vaccine was] going to help me to prevent [reinfection] later on. (P10) • The only reason I got [the vaccine was] because I went to my nurse, my doctor, and had an antibody test done two months after having COVID and she told me I didn’t have any antibodies. So I said, I need to protect myself [from reinfection]. Let me get the vaccine. (P11)
	b. The impact of vaccination on long COVID symptoms	• My smell has come back since I’ve had the vaccine … My husband was peeling apples this weekend and I thought he was cooking apples and he was like, ‘Could you smell them from upstairs?’ and I’m like, ‘Yes’ … So, [that was] the first time I’ve had a big smell in the house in a minute. (P1) • The first thing I noticed after I got my second vaccination [was] that I no longer had the daily headaches [and] my breathing was better. (P3) • I think that [the vaccine has] brought some positive and negative effects on the people but on me it brings just negative consequences. (P9) • I thought [the vaccine was] going to … improve my symptoms and increase the immunity in my body. (P10)

Vaccine safety and efficacy.

Participants who viewed the COVID vaccine as familiar were more receptive to vaccination than those who saw the vaccine as a novel treatment. Although more participants perceived the vaccine as unsafe than not, one participant explained how she viewed vaccines as a part of normal life: ‘We’ve been dealing with vaccines since we came into this world.’ (P1)

Those who saw the vaccine as a novel treatment were concerned about the new application of mRNA technology and desired further testing of the vaccine. One participant who was a public health researcher and who received the vaccine explained why she was still hesitant about its expedited development and approval. She explained: ‘The mRNA research has been going on for 20–30 years. All of a sudden, we’re able to create a vaccine in a matter of months from it. So I’m like hmmm.’ (P3)

Another participant who was not vaccinated echoed similar concerns about COVID vaccine safety, reasoning that since the vaccine was developed quickly, it lacked formal approval and was therefore unsafe. For example: ‘I haven’t got it yet and I’m not sure because it’s not really approved. So, I kind of wanted a vaccine that would be more safe.’ (P7)

Similarly, another participant worried that the quick development meant uncertainty about long-term safety: ‘[I did not get vaccinated] because I don’t know the [long-term] effects down the road, and it came out too fast.’ (P8)

Some participants sought the vaccine to gain protection for themselves and to feel more comfortable around others in public:

Vaccines are preventative. So that was really my goal, [I was] tired of every little sniffle. I’m like, ‘Is something happening or [is] somebody coughing around me?’ So I just wanted peace of mind and [I was] hoping that it would do a little something, protective-wise, even if it is not as effective as we think. I know someone, they got the vaccine and got COVID still after getting the vaccine. So, I know that’s the thing, but just hoping to lessen my chances of getting sick. (P12)

One participant talked about how working around kids who may be more likely to carry COVID was a reason why she felt like she needed to get vaccinated: ‘I got the Pfizer because I do work at a school with kids. Kids travel.’ (P4) Other participants talked about wanting to protect people in their community. For example, one participant was motivated to get vaccinated because of young children in her home: ‘I [got vaccinated] for my babies’. (P6)

In summary, the level of comfort with vaccine technology and the perceived ability of COVID vaccines to protect oneself and others from infection influenced whether participants viewed the COVID vaccines positively or negatively.

Social implications of vaccination status

Participants spoke about how community ties, such as neighbors, friends, and leaders, impacted their perceptions of the vaccine. One participant recounted that once her immunocompromised neighbor and their family got COVID, both the participant’s family and the neighbor’s family got vaccinated to protect each other: ‘And then, I don’t know about my other neighbor, but I do know the one with the health problems, that whole household got [COVID], and so everybody has been vaccinated. We’ve been vaccinated.’ (P3)

While some participants found support within their communities, others viewed community ties as a stressor. One participant feared that she would be shunned by her neighbors for deciding not to get vaccinated: ‘I’m scared that now if I don’t [get vaccinated], then I’m going to be singled out because I don’t have it. It’s so much pressure.’ (P13)

In addition to neighbors, some participants discussed how their religious leaders spoke out for or against the vaccine. One participant recounted how his pastor who spoke out in favor of the vaccine and suggested the church help distribute it soon faced backlash from community members both in person and on social media. For example:

My pastor made a comment that there are churches distributing the vaccine, and someone made a comment [asking] why he’s doing that because it’s a government-made thing and his response loosely was unless you’ve been there, attending the funerals and been there with these people that have damage, don’t come at me with this because I’m trying to help protect my congregation, the community in which I live. I saw that comment on Facebook and I just started laughing, I was like, ‘oh boy, this is not gonna be good.’ (P2)

In contrast, another participant expressed that her pastor was openly against the vaccine: ‘The discussion goes our pastor is totally against vaccinations. He’s the conspiracy theorist and I’m a conspiracy theorist also, but he’s really against the vaccine.’ (P3)

The social tension participants expressed feeling during conversations about the vaccine with neighbors and community leaders also extended to interactions with family members. One participant described the tension of opposing ideas as “policing” when he recounted a debate he had with his mother about whether they should get vaccinated. For example:

I’m getting tired of people over-policing other folks. Having opinions that they feel that are more valid than other peoples’. I got into this heated debate [about the vaccine] with my mother this past weekend … I said [to her], ‘You have an opinion, and I have an unalienable right to disagree with you. That is my right. God put us on this earth with the ability to make a choice.’ (P2)

Beyond face-to-face interaction, some participants reflected on how one-way sharing of vaccine-related information on social media influenced their perceptions of the vaccine. For example, one participant referenced a social media trend called the magnet challenge in which recently vaccinated individuals sought to expose dangerous contents in the vaccine such as magnetic particles by placing magnets on their arms. The participant who was vaccinated explained that even when social media challenges failed, they caused her to doubt whether she made the right decision by receiving the vaccine. For example:

Yeah, they saying [on social media], this is an experiment. I don’t know if you’ve seen the stupid magnet challenge, they put [a magnet] on their arm after getting the vaccine and stuff like that … It fell off, it fell off, it didn’t stick, but stuff like that, it messes with your head. Like did I make the right decision, or did I not? I don’t know, you know? (P6)

Additionally, several participants spoke about the politicization of the vaccine and its impact on vaccine uptake. One participant had to travel an hour away from her home to a more conservative area that had more vaccines available at local pharmacies: ‘There was an opportunity [to get the vaccine] at a CVS, or Walgreens, or Rite Aid, or something in Ohio, and apparently folks weren’t signing up for it. It was a pretty conservative area. So a friend and I drove like an hour each way to go and get the vaccine’ (P12)

Overall, participants reported encountering various levels of support and lack of support when discussing the vaccine within their social networks. Neighbors, community leaders, and family exhibited different levels of influence over one another, which resulted in social tension. Interactions impacted participants’ perceptions of the vaccine and their decisions to get vaccinated.

Navigating and interpreting vaccine-related information

Participants reported receiving inconsistent vaccine-related information from authorities such as public health organizations and healthcare providers. One person talked about how hard it was to know when to get vaccinated following an acute COVID infection. For example:

[The case manager] … reiterated [I should wait] about three months [before receiving] the vaccine because she was saying I already have natural antibodies and that [scientists] believe that they last for three months. So what could be better than natural antibodies? However, the only thing is the information…keeps changing. So I hear this from one person and I hear something else from another… [The antibodies] may last three months for you, and a month for me, so then I was told by another doctor that I should go and get tested for [them], maybe every month or something like that. So I don’t know, but I know they tried, I would say that, and I don’t fault them so much because they’re getting information from somewhere too and so it’s changing on them too. (P5)

When the COVID vaccine was first released to the public, major media outlets in the USA reported on possible complications, such as blood clots and allergic reactions (Sudharsanan et al. 2021). A fear of complications also played a role in the vaccine decision-making process for those with long COVID. For example:

The part that’s scary is the fact that [the vaccine] could cause complications. // The fact that it could harm to you. That’s the scary part. (P14)

Experiencing an individual burden to navigate and interpret vaccine-related information, participants weighed the pros and cons of vaccination and considered information from multiple sources, including the public. For example:

I’ve learned to kind of balance my viewpoint so that I’m not so close to something and I’m not so far away, but I’m finding that medium ground that allows me to have more of a global view of everything, and not just commit to this thing right here. // I have to look at the [vaccination] trends, I have to look at what people are doing, I have to look at what people are saying, and I have to listen to them. (P2)

Inconsistent vaccine-related information, especially regarding recommendations for COVID survivors and those with long COVID, led participants to express feelings of stress, confusion, and uncertainty. Without clear, trustworthy guidance from medical or government authorities, participants felt obligated to discern possible risks and benefits associated with the COVID vaccines to make a personal decision about whether to get vaccinated.

Possibility of Abuse and Exploitation

Some participants expressed concern about vaccine contents and safety which suggested a lack of trust in the scientific community. For example: ‘I also heard [there’s] stuff in that vaccine that you don’t want in your body.’ (P8)

Of the participants who were unvaccinated, mistrust in the government and scientific community was a main motivator against vaccination. One participant feared the vaccine would cause a gradual deterioration in her physical health and eventual death because she did not trust the medical field (‘I think it’s just a slow death, because I don’t trust the medical [field].’ - P13)

Mistrust extended to medical research. One participant who received the vaccine avoided downloading an app to monitor the after-effects due to concern that her health information would be stored and used in a nationwide database without her consent.

When I went and got the Moderna shot, they give you the information so you can report your after-effects daily. My sister was like, ‘Did you sign up for the app so you can [log your after-effects]?’ I was like no, I don’t want to be in anybody’s system [related to the vaccine.] … This is nationwide. (P3)

Several participants described their current mistrust in social systems as informed by historical injustices and related to the possibility of abuse and exploitation by medical research groups and the government. For example, one participant explained how historical events like the Tuskegee study of syphilis and the Black Wall Street massacre contribute to a legacy of systemic abuse and exploitation of Black communities in the USA.

We could talk about the Tuskegee experiment, we can also talk about Black Wall Street and Tulsa, Oklahoma, we can talk about so many other things … that affected us that [did] damage to us … by the government. (P2)

Even among people who were vaccinated, there was mistrust in the government’s motivations to create a COVID vaccine.

mRNA has been researched and been around for 20–30 years, but all of a sudden now when [the government wants] to be able to move forward and get money and funding, [they create] a problem, so [they] can come up with the [vaccine as a] solution. That’s what I believe. (P3)

Regardless of vaccination status, participants reported feelings of mistrust in social systems such as the medical field and the government. At times, participants discussed current mistrust in relation to historical abuse and exploitation of the Black community, which further informed their perceptions of the COVID vaccine.

Long COVID status

For some participants, a severe case of acute COVID served as a primary motivation to get vaccinated. One participant who was hospitalized explained how vaccination was one of many ways to be protected from reinfection and to protect others from contracting COVID:

Let me break it down. [As] someone that has actually had a near-death experience with COVID-19, you know the risk of actually contracting COVID for the second time. So, I’m actually vaccinated. I took the Pfizer vaccine. I was looking for every way to protect myself from [reinfection] because [acute COVID] was a very bad experience I wouldn’t want anybody to experience. (P15)

Long COVID symptoms also served as a reminder of the severity of acute COVID, which motivated some participants to receive the vaccine: ‘I’m still dealing with the fact that I’m suffering from long-term symptoms [of COVID]. I do not want the disease again.’ (P3)

For others, long COVID status led them to express vaccine hesitancy due to the lack of medical knowledge around long COVID and how they may respond to the vaccine. One participant worried that in the event of an adverse reaction to the COVID vaccine, she would not be able to receive adequate treatment and would die.

I’m not against vaccination. I’ve been vaccinated my whole life, my kids are vaccinated. But when it comes to this [COVID vaccine] I’m very hesitant because no one has been able to tell me what the virus has done to my body, so … how do I know when I take this [vaccine], if something starts to happen to me, how do we know what it is? … I don’t feel like anyone really knows enough. And I’m afraid that … if I take this [COVID vaccine], I’m just going to be honest, that I’m literally going to die. (P13)

Fear of a negative health response to the vaccine and a subsequent worsening of long COVID symptoms prevented several participants from receiving the vaccine. Participants worried that since the vaccine was composed of the virus itself, it would trigger a “dormant” form of the virus in someone with long COVID. For example: ‘[The vaccine] could worsen my symptoms somehow. All the vaccines are actually made from the virus itself so there could be a trace of the virus that could trigger the virus again in me or something.’ (P7)

Additionally, participants reported a change in their long COVID symptoms after receiving the vaccine. Some experienced an improvement of symptoms, although one participant believed that the vaccine caused her condition to significantly decline.

Before the vaccine I kind of started feeling a little bit okay, still had [long COVID] symptoms, but not as bad. Once I got the vaccine it’s kind of like the symptoms just started being off the charts, and that’s when the shortness of breath just kind of kicked in after the vaccines. So, I feel like the vaccine played a part in me being even sicker now. (P11)

Participants balanced a desire to avoid reinfection with a fear that the vaccine would worsen long COVID symptoms. While a few participants discussed a worsening or no change in their symptoms after vaccination, several others found that their symptoms subsided or otherwise improved after vaccination.

DISCUSSION

Comparisons with previous literature

In this qualitative study of COVID vaccine perceptions among Black adults with long COVID, participants included vaccinated and unvaccinated people. Participants weighed their views of COVID vaccine safety and efficacy, whether positive or negative, when deciding whether to get vaccinated. Participants reported social tension when engaging in conversations about the vaccine with family, neighbors, and community members, which they felt were impacted by political affiliation and misinformation they saw on social media. Due to the lack of evidence concerning COVID vaccines among those with long COVID, participants felt an individual responsibility to navigate conflicting vaccine-related information from authorities. In those who were not vaccinated, the desire to refuse vaccination was amplified by a lack of trust in the government and scientific community. Some participants explained how this lack of trust is rooted in the historical abuse and exploitation of Black communities by the government and the medical field. Finally, long COVID symptoms also influenced vaccine perceptions. Participants talked about not being vaccinated due to the uncertainty of how their bodies would respond to the vaccine.

Our findings are consistent with previous work indicating that those with long COVID status may delay vaccination due to general concerns about vaccine safety, particularly for those who experienced moderate to severe symptoms of acute COVID. Additionally, participants in our study expressed concerns about when they should receive the vaccine following acute COVID infection and whether the vaccine would worsen their long COVID symptoms. Previous qualitative research using Twitter, Facebook, blogs, and online forums, revealed that for those with long COVID, key areas of concern include when to receive the COVID vaccine, the potential impact of the vaccine on long COVID symptoms, and a lack of support and resources (Miyake and Martin 2021). Our study suggests that it may be important to pay particular attention to these concerns among Black patients with long COVID because of systemic racism and historical injustices in communities of color. Similar to the flu vaccine and HPV vaccine, COVID vaccine uptake in the USA is influenced by perceptions of individual risks and benefits rather than populational threats and consequences (Mercadante and Law 2021; Schmid et al. 2017). Our findings for the COVID vaccine echo findings of other studies in which the rapid sharing of unregulated anti-vaccine messaging on social media has reduced public confidence in vaccine development (Puri et al. 2020). Future research is needed to identify whether increased awareness or specific educational content can improve vaccine acceptance.

Our results are also consistent with previous studies that found vaccine hesitancy in minority populations to be linked to historical exploitation, police brutality, lack of representation in medicine, and racism in healthcare, including unconscious bias, stereotyping, and prejudice (Ochieng et al. 2021; Osakwe et al. 2022). For example, in a qualitative study of Black and Hispanic adults, participants described a preference for vaccine-related information conveyed by individuals “like-me,” which suggests that leveraging the social networks of minority patients and providing culturally relevant vaccine messaging may be helpful in promoting vaccine uptake (Osakwe et al. 2022). Other studies that focused on those with long COVID found participants more likely to delay vaccination due to concerns about the body’s immune response to mRNA and other vaccine constituents (Arnold et al. 2021; Miyake and Martin 2021). However, our findings suggest that the opposite may also be true, as some participants desired to receive the vaccine to avoid reinfection. It is possible that better patient-provider communication could improve COVID vaccine perceptions. In other areas of medicine, strong patient-provider communication can increase the uptake of preventative medicine such as colorectal cancer screenings (Carcaise-Edinboro and Bradley 2008). Additionally, the quality of patient-provider relationships is inequitably distributed across racial/ethnic groups. In a qualitative study of urban primary care practices in Maryland and Washington, D.C., USA, race-concordant visits were longer and more satisfactory for patients (Cooper et al. 2003). However, racial and ethnic minorities continue to be underrepresented among medical school matriculants (Lett et al. 2019).

Strengths and Limitations

A qualitative approach was the main strength of our study, as participants were able to give highly detailed accounts of their experiences with long COVID and vaccines. Another primary strength of our study was interviewing those who self-identify as Black or African American since these communities are underrepresented in research and the development of health interventions. We expect that our results will provide valuable insight to local and state public health organizations seeking to increase vaccine uptake in partnership with Black individuals.

There are some limitations to our study. For instance, most of our sample was from Michigan and female. That said, long COVID is more common in females than in males, and the purpose of this study was not to compare results by sex, gender identity, or geographic area. For reference, Michigan is a state where 15% of the population was fully vaccinated with two doses of the COVID vaccine by March 26, 2021, which is consistent with USA national vaccine rates where 15% of the total population was considered fully vaccinated by March 2021 (“US Coronavirus Vaccine Tracker” 2022). Additionally, this is a qualitative study with a sample size of 15 participants. As an exploratory study, our results are not intended to be generalizable to all Black or African American adults with long COVID, but rather begin to provide insight on key perspectives that influence vaccine decision-making. While vaccine perceptions were not specifically monitored for saturation during data collection, we ensured that each of our main themes reflected the perspectives and experiences of at least five participants and each sub-theme reflected that of at least two participants. Despite the small sample size, we feel that there is enough richness in the data to provide novel insight on vaccine perceptions of Black adults with long COVID that can help inform future vaccine-related policies and interventions. The consent form was sent electronically, and all interviews took place virtually over Zoom, which may have prevented individuals of lower socioeconomic status from participating in the study. However, recent research has also found that virtual data collection increases access to participation for some who would not otherwise participate in research (Archibald et al. 2019). Furthermore, interviews were conducted over a 4-month period between May and September 2021, which may not have captured significant changes in long COVID healthcare provision and the increase in knowledge and awareness of long COVID and COVID vaccines over time. Future studies should consider factors that influence changes in vaccine perceptions over time. Though not asked directly about potential allergies to the vaccine in the interview, none of the participants indicated that they were concerned about a potential allergic reaction or had previous allergic reactions to other vaccines. While allergic reactions to the COVID vaccine are rare (e.g., 0.63% of those who received the Pfizer-BioNTech vaccine and 1.5% of those who received the Moderna vaccine (Banerji et al. 2021)), this is a topic worthy of further study.

Implications and future directions

Future research should focus on how hospitalization during acute COVID and long COVID symptom severity may impact intention to receive the vaccine. Some studies suggest the COVID vaccine can improve long COVID symptoms (Arnold et al. 2021; Jamoulle and Kazeneza-Mugisha, n.d.; Strain et al. 2022) whereas others suggest a worsening or no significant change of symptoms (Wisnivesky et al. 2022; “Why Vaccines May Be Helping Some With Long COVID” 2021). More research must be done to investigate the potential drawbacks and benefits of receiving the vaccine for those with long COVID. Many participants in our study said that inadequate research in this area was the primary reason for their hesitation to receive the vaccine.

Several participants spoke about the politicization of the COVID vaccine and the impact of political affiliation on vaccination status. Politicization has occurred with scientific phenomena including climate change and healthcare policy. In the USA, Democrats tend to display more favorable altitudes towards all types of vaccinations, greater perceived threat of COVID, more trust in the media, and lower trust in the federal government compared to Republicans (Fridman, Gershon, and Gneezy 2021). Future research should investigate how certain scientific phenomena such as vaccine uptake are politicized and how they may be depoliticized.

Evidence-based social media interventions can help promote proper education about the vaccine and counteract vaccine hesitancy resulting from misinformation (Chadwick et al. 2021). For maximum efficacy and coverage, public health organizations should tailor content to social media users by using emotive language, narratives, and imagery common to social media (Puri et al. 2020). Health agencies, government websites, and healthcare providers should partner with social media platforms to improve their online presence and to target youth and parents. Social media provides a unique opportunity for health agencies to rapidly monitor public confidence in vaccines, recognize public concerns, and combat vaccine hesitancy early on (Puri et al. 2020).

Our findings suggest that proper education about the COVID vaccine should also be an integral part of post-COVID care. Previous studies on long COVID emphasize the importance of patient-provider interactions and multidisciplinary follow-up (Vehar et al. 2021; Ladds et al. 2020). By circulating extensive, accurate information about the vaccine, public health organizations can help people navigate the vaccine decision-making process. Medical establishments should use lay language to communicate to the public more clearly. Additionally, they should emphasize that scientific research has confirmed the safety and efficacy of the COVID vaccine, and that research groups may use patient data from COVID testing or vaccination sites. To ensure that vaccine-related information reaches racial and ethnic minority populations, it should be distributed in churches, mosques, faith-based institutions, barber shops, hair salons, and other trusted community-based organizations (Karlsson et al. 2021).

Conclusion

Low vaccine uptake in Black communities may exacerbate racial/ethnic health inequities associated with the COVID pandemic. In this qualitative study, the factors that influenced vaccine perceptions among Black adults with long COVID included: vaccine safety and efficacy; social implications of vaccination status; the challenge of navigating and interpreting vaccine-related information; the possibility of medical or government abuse and exploitation; and long COVID. As COVID reinfection and long COVID become more common, achieving adequate uptake of COVID vaccines and boosters may require approaches that are tailored in partnership with the long COVID patient community.