Understanding Stakeholders’ Perspectives to Increase COVID-19 Vaccine and Booster Uptake among Black Individuals with Rheumatic Conditions

Abstract

Objective:

Disparities in COVID-19 vaccine and booster uptake persist. We obtained perspectives from community- and physician-stakeholders on COVID-19 vaccine and booster hesitancy and strategies to promote vaccine uptake among Black individuals with rheumatic and musculoskeletal conditions.

Methods:

We invited community leaders and physicians in greater Boston and Chicago to participate in semi-structured interviews using a moderator guide developed a priori. Participants were queried about how to best address vaccine hesitancy, strategies to target high-risk populations, and factors to identify future community leaders. Interviews were audio recorded, transcribed verbatim, and analyzed thematically using Dedoose.^™

Results:

Eight physicians and 12 community leaders participated in this study between November 2021 - October 2022. Qualitative analyses revealed misinformation/mixed messaging and mistrust, with subthemes including conspiracy theories, concerns regarding vaccine development and function, racism and historical injustices, and general mistrust of healthcare systems as the top cited reasons for COVID-19 vaccine hesitancy. Participants also shared demographic-specific differences, such as race, ethnicity, age, and gender that influenced the identified themes, with emphasis on COVID-19 vaccine access and apathy. Strategies for community-based vaccine-related information dissemination included personal storytelling with an iterative and empathetic approach, while recognizing the importance of protecting community leader well-being.

Conclusion:

To increase vaccine uptake among Black individuals with rheumatic conditions, strategies should acknowledge and respond to racial/ethnic and socioeconomic injustices that engender vaccine hesitancy. Messaging should be compassionate, individually tailored, and recognize heterogeneity in experiences and opinions. Results from these analyses will inform an organized community-based intervention in Boston and Chicago.

Graphical Abstract

Background

While nationwide efforts have helped reduce COVID-19 vaccine hesitancy and promote uptake among individuals from historically marginalized populations,¹ inequities in vaccine series completion and booster uptake persist.² As of May 10, 2023, the percentage of Black (45.0%) individuals who have completed the primary COVID-19 vaccine series remains below that of White (51.9%) and Hispanic/Latinx (57.3%) individuals.³ Further, fewer Black (9.5%) and Hispanic/Latinx (9.1%) individuals have received the bivalent Omicron booster compared to White (16.7%) individuals.³ Vaccine hesitancy among Black and Hispanic individuals may stem from inequitable care and structural racism in the U.S.^4–6 Structural racism refers to the ways in which societies foster racial discrimination through mutually reinforcing macro-level systems (e.g., housing, education, healthcare, criminal justice).⁷ Additionally, the ever-changing COVID-19 vaccination public health campaign has led to confusion, perpetuating vaccine hesitancy.^8–10

Among individuals with rheumatic conditions, studies have demonstrated disproportionate burden of COVID-19 disease, adverse outcomes, and vaccine hesitancy among historically marginalized individuals paralleling the general population. In a global study, 51% (N=131/256) of Black (OR 3.18, 95% CI 2.31–4.36) and 37% (N=103/279) of Latinx patients (OR 2.00, 95% CI 1.46–2.75) with rheumatic conditions were hospitalized with COVID-19-related complications compared to 29% of White (N=187/639) patients.¹¹ The odds were modestly attenuated and statistically significant after adjusting for comorbidities, medication use and disease activity.¹¹ Immunocompromised individuals often have a less robust vaccine response, raising the importance of vaccinating their social networks for a “cocooning effect” to reduce transmission from close contacts.¹² Despite high rates of serious infection among individuals with systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA), vaccination rates overall are low, with disparities by race, ethnicity and insurance status.^13–15

As of May 10, 2023, only 17.0% of the U.S. population has received an updated bivalent booster dose.³ Exploring strategies to increase vaccination and booster rates are urgently needed among historically marginalized populations with rheumatic conditions. Partnering with community-based leaders to disseminate accurate, culturally tailored information is essential. Popular Opinion Leaders (POLs), or trusted community members, can be trained to disseminate information about risk-reducing health behaviors through their social networks.^16–18 The POL model can increase community knowledge, reduce stigma, and prompt behavioral changes and has been applied to SLE to improve access to care and trial enrollment.^16–18

We aimed to interview community- and physician-stakeholders in two U.S. cities about community and patient perspectives on COVID-19 vaccines and boosters, barriers, and strategies to promote vaccine uptake. This qualitative data will inform a future intervention that leverages the POL model to improve COVID-19 vaccine and booster uptake among Black individuals with rheumatic conditions.

Methods

Participants and Data Collection

We recruited physicians and community organization leaders and/or active members we had established partnerships with, several of whom were previously trained POLs, aged ≥18 years, to participate in virtual, key informant, semi-structured individual interviews. We developed moderator guides a priori with separate versions for physicians and community leaders (Supplemental Material). Study staff (SU, CHF), who identify as Black and White, respectively, together led physician and community leader semi-structured interviews. Following verbal consent, interviews (~40 minutes) were conducted virtually via Zoom from November 2021 – October 2022, and were audio recorded, deidentified, and transcribed verbatim. We concluded recruitment once thematic saturation was reached. This study was approved by the Mass General Brigham Institutional Review Board.

Qualitative Analyses

Transcripts were analyzed using the constant comparative method, a data-coding process used for categorizing and comparing qualitative data.¹⁹ Study team members (SU, NE, CHF, GS) individually reviewed transcripts and independently identified themes. The team met, reviewed preliminary themes, adjudicated discrepancies, and defined final themes. The team developed a coding system that reflected themes, subthemes, and categories for future intervention design. Initial codes, definitions, and examples were collated (GS) and agreed upon by the team (SU, NE, CHF) for review. Demographic-specific reasons for vaccine-hesitancy, and the ways these factors permeated identified themes, were emphasized in the coding system. We used an iterative approach to develop a standard coding system. Two researchers (NE, GS) individually coded transcript 1, adjudicated differences in codes, changed the coding system accordingly and finalized the coding system after parallel coding was implemented for transcript 2. The remaining transcripts were then coded separately by two reviewers (NE, GS). Kappa’s for inter-coder reliability were 0.79 (NE for re-review of GS transcripts) and 0.72 (GS for re-review of NE transcripts); 75% (286/380) of excerpts were coded the same. Five of the differences were excluded because of lack of context/incomplete quotes, 28 had the same theme but different subthemes (e.g., Mistrust with Conspiracy Theories vs. Mistrust with Politicized Skepticism) or used the same theme but one added demographic-specific codes (e.g., Strategies vs. Strategies, Demographic-Specific), and 61 had a difference in theme. A third coder (SU) reviewed and adjudicated all discrepancies. Eight interviewees also reviewed the themes, descriptions, and selected quotes as presented in this manuscript for their critical input. We stratified qualitative analyses by participant role (physician or community leader/POL). While primary analyses focused on themes, we also quantified the number of quotes by theme/subtheme stratified by role. Dedoose^™ software²⁰ was used for analyses.

Results

Twenty individuals (age ≥18) participated in 18 semi-structured interviews. Eight were physicians in adult and pediatric rheumatology, infectious disease, and primary care. Twelve were community leaders affiliated with the Center for Community Health Education Research, Sportsmen’s Tennis and Enrichment Center, Mission Hill Health Movement, AllianceChicago, Women of Courage and the Labalaba Foundation. Six community leaders were previously trained as POLs through SLE-related projects.^16,18 Five participants were from greater Chicago, IL, 15 were from greater Boston, MA. Nine identified as Black, 4 White, 3 “Other,” 1 Asian, 1 Black and Other, and 2 did not respond. Fifteen participants identified as female, 3 as male, and 2 did not respond. We were unable to transcribe and analyze one community leader interview due to poor sound quality, but detailed notes during the interview informed the themes. Three community representatives from the same organization joined one interview, which was coded as one community-leader participant as the individuals spoke collectively providing complementary answers.

We defined and identified overarching themes and subthemes (Table 1). Representative quotes by theme were extracted from physician (Table 2) and community leader/POL transcripts (Table 3). Previously trained POLs and community leaders were combined to maintain anonymity. The number of participants who mentioned each theme (Figure 1) and total number of times each theme was mentioned (Supplemental Figure 1) were counted and stratified by physician and community leader/POL. We stratified our figures based on whether the theme was mentioned by a physician or community leader/POL (CL), however, we present thematic analyses by commonality of themes, as physicians often reflected on discussions with their patients.

Table 1.

Description of Themes and Subthemes

Theme	Subtheme	Definition
Mistrust*		Doubt in and suspicion of people, organizations, and systems
Conspiracy Theories		Belief that the vaccine & pandemic is a result of a secret plot
Healthcare Systems		General suspicion of pharmaceutical companies, physicians, and healthcare institutions
Politicized Skepticism		Politically driven vaccine hesitancy
Racism & Historical Injustices		Racism or historical injustices in healthcare
Vaccine Development & Function		Concerns and misunderstanding on vaccine development and function
Access*		Material, psychological, and systematic barriers that inhibit vaccination
Apathy*		Notions that fuel vaccine-related indifference
Booster-specific Hesitancy		Assessment of personal risk to benefit ratio that engenders delayed booster vaccine uptake
Disruptions		Disturbances and barriers to essential daily tasks and schedules that impact booster vaccination status
Messaging		Ineffective information dissemination that fuels booster-specific confusion and hesitancy
Categorization by Degree of Hesitancy		Classification of individuals by degree of vaccine-hesitancy
Misinformation, & Changing- & Inconsistent-Messaging		Vaccine information sources and messaging that fuel confusion, misinformation, and fear
Role of Religion & Cultural Beliefs		Influence of religion and cultural beliefs on vaccination status
Safety*		Profile of well-being and side-effect concerns
Motivating Factors*		Reasons to seek out vaccination
Role of Social Network & Sources		Who, where and how an individual receives vaccination information impacts vaccine uptake
Strategies*		Effective communication, psychological, and material means to disseminate vaccine-related information to community members
Categories for POL Intervention Design
POL Traits		Traits and characteristics that make an effective POL
Physician Knowledge of Patient Social Network		Knowledge and description of patient’s social network
Concerns about being a POL		Concern and worries about being a person who disseminates information

^*Demographic factor subtheme was included in coding system for the following themes: access, apathy, mistrust, motivating factors, safety, and strategies

Table 2.

Reasons for COVID-19 Vaccine Hesitancy – Selected Quotes from Physicians

Mistrust	“There are many people who have no specific thing that they will cite on questioning. They just don’t trust it.” (Transcript 11)
Mistrust  Conspiracy Theories	“I have had a couple people who do talk about it being implanting a microchip and being followed. I was surprised because they were not people that I would’ve thought would endorse that belief.” (Transcript 11)
Mistrust  Demographic Specific	“I work predominantly in [City], [City], and [City], and so obviously, predominant African American population. […] the younger demographic within that racial demographic, 18–35 year-olds who are often last to be targeted with the vaccine and not have a lot of direct, creative messaging that makes them compelled in any way to do it, and particularly at-risk young adults, so those who are gang involved and may not be getting information from school, may not get it from their employer, may not be getting it from other trusted sources.” (Transcript 12)
Mistrust  Healthcare Systems	“Trust in the pharmaceutical industry, I had patients saying right off before the vaccines even came out, ‘I’m not taking anything from [NAME]. How can you trust them after the baby powder, or whatever, incident?’” (Transcript 11)
Mistrust  Politicized Skepticism	“I get this sense that they think its political and the democrats have pushed it forward and therefore it is inherently not to be trusted. Like inherently. No matter what I said or did.” (Transcript 1)
Mistrust  Racism & Historical Injustices	“[…] there are young Black people, educated middle-class folks in my generation right now who are saying, ‘You know, healthcare has not done well by us. I’m sure that this vaccine hasn’t been studied in us. I’m not about to get a vaccine that is not made for us by us.’” (Transcript 6)
Mistrust  Vaccine Development & Function	“Initially I think there was a lot of hesitance from patients in general, particularly around maybe the newness of it or how quick they thought it had come out and maybe a general sense of things being experimental as opposed to established.” (Transcript 4)
Access	“I would add ongoing issues with access. […] You have to put that in the context of people’s lives. The chaos that people may be living in, the stress, the strain, the other worries, and think about, no, it’s not gonna happen unless you bring that booster to their door and knock on it, and say, ‘Here it is.’” (Transcript 15)
Access  Demographic Specific	“Then my seniors, many of them just don’t like the online thing at all and completely are turned off by that. I have a few patients who are homebound, so that was another thing, and a couple who truly cannot leave, so identifying resources to go to their home to administer the vaccine, especially twice, is—and then, again, with the booster is a big difficulty.” (Transcript 11)
Apathy	“Those numbers just don’t seem to move people, like ‘3,000 people died today from COVID. X-number of people have had this.’ It just doesn’t seem to move.” (Transcript 11)
Apathy  Demographic-Specific	“I also have a group of older patients particularly where the messaging is more like ‘Why would I even get it, it’s sort’ve if I get it and I die, I die.’” (Transcript 4) “We started first with food access work. That’s what people really cared about when the pandemic started. They’re like, ‘Screw this vaccine. I don’t care. I need food. I need basic services that aren’t available to me right now.’” (Transcript 12)
Booster-specific Hesitancy  Disruptions	“I think, for people who got sick the first two times and missed work, that was a problem. They don’t mind the idea of getting boosted. They just want a time where they feel like they can be sick for the next day or two.” (Transcript 10)
Booster-specific Hesitancy  Messaging	“The messaging has been poor in terms of boosters. […] Many people believe that boosters are an option, and just the term ‘booster’ doesn’t equate to essential—doesn’t equate to severity of illness and death if I don’t get it. It just means that it’s just an option.” (Transcript 15)
Categorization by Degree of Hesitancy	“It’s what everyone says about vaccine hesitancy. There are some people who are just no’s, and they are super hard to move and there are people in the middle. And I usually know within the first couple of minutes of talking to them where they are going to be […].” (Transcript 1)
Misinformation, & Changing- & Inconsistent-Messaging	“People get really turned off when the message changes too much. […] the J & J vaccine was great, and you recommended me to take it. Now, it says that it’s not good. Now, I trust you less.” (Transcript 10)
Role of Religion and Cultural Beliefs	“When you think about what are the norms within somebody’s, not only somebody’s personal norms, but their family norms, their social network norms, there are norms that are out there that people just don’t necessarily feel like this is necessary. That their body will handle this.” (Transcript 15)
Safety	“Heart side effects, especially, I hear, ‘Heart disease is in our family. Why would we take something that can cause heart problems?’” (Transcript 11)

Table 3.

Reasons for COVID-19 Vaccine Hesitancy – Selected Quotes from Community Leaders

Mistrust  Conspiracy Theories	“That they wanna kill all the Black people, that they’re tryin’ to put a chip in so they can follow everyone. Oh, it was a lot of different ones. Some of them I couldn’t even believe.” (Transcript 18)
Mistrust  Politicized Skepticism	“Then if you’re looking at the society where we live, I think a lot of it has come from the fact that COVID and vaccines and all these things has really found its way very early on into the political arena. That skewed a lot of things. We’re not talking about health and science anymore.” (Transcript 7)
Mistrust  Racism & Historical Injustices	“First his comment was, ‘I’m pretty sure there’s something wrong with the vaccine, or’—and he said the reason being was because he was trying to figure out how it was that they were able to get access to the vaccines in the jail ‘cause, as you know, we were prioritizing people who are incarcerated when his people on the outside couldn’t get it. We explained that, well, actually we prioritize you, and so that’s why you’re able to get access to the vaccine. He paused for a moment, and then he looked, and he said, ‘Well, I’m just wondering, because they never prioritized me before. That’s why I’m here because nobody ever prioritized me. Why are they prioritizing me now? There must be something wrong with this vaccine.’” (Transcript 17)
Mistrust  Vaccine Development & Function	“You would hear community members sayin’, ‘Oh, how can they have a cure for COVID-19 and they don’t have one for breast cancer.” (Transcript 18)
Access	“Well, I mean there are always barriers, depending on where a person lives, but then I see so many other locations opening up. To me personally, there’s no reason why you can’t get the shot in terms of availability.” (Transcript 8)
Access  Demographic Specific	“They were focused on the older Hispanic/Latinx population. […] a lot of concerns around documentation and insurance and what would be needed.” (Transcript 16)
Apathy  Demographic Specific	“If you meet teenagers, a Black teenage boy who lives in a low-income area. I’ve met them and they’ve said, ‘Oh,’ a lot of them already have the colors for their funeral planned. It’s like no expectation of getting old. Or I’ve met men who are 27, 28 who suddenly have to figure out how am I living my life? I never thought I would get this old. If you don’t expect to live a long time, then maybe that’s a reason not to get vaccinated. I don’t know their perception. You know how boys are—teenagers. Their perception of risk is totally different than most people.” (Transcript 14)
Booster-specific Hesitancy	“I think people just are—they don’t know exactly why they need it especially since there seems to be an opening up of everything. […] Then there’s been a lot of people who had no problem with the first two shots and had severe reactions with the third one. That also makes ‘em reluctant to get a fourth one because they don’t know what the impact is. I think a lot of people—I think there’s still a lot of question about what is RNA vaccine. People are either in why we need to get these constant booster.”(Transcript 14)
Booster-specific Hesitancy  Messaging	“I think there’s a carelessness with how words are used in media about talking about vaccines. I think because after talking with my doctor, I found out there’s a difference between boosters and third doses, and I’ve heard them use interchangeably in public spaces, in the media and in radio and TV and that stuff.” (Transcript 9)
Categorization by Degree of Hesitancy	“I know a lot of people had adopted the ‘wait and see’ attitude. Let the first group of people get shot up and we’ll see if they’re still alive in six months. Then we’ll go ourselves.” (Transcript 14)
Misinformation, & Changing- & Inconsistent-Messaging	“I think there’s confusion. I think people don’t know where to go and get them. Someone just said to me the other day, ‘now people over 65 or older can get the vaccine’ and I’m like ‘no, no no, no, no. People 65 and older are eligible, have been eligible.’ […] However, when it just came out this week, it wasn’t clear that it was for the general population. I had three people actually mention that to me because they were shocked I got the vaccine. I’m like ‘what do you mean? I was cleared.’” (Transcript 3)
Role of Religion & Cultural Beliefs	“I have some family members who are not—close family members who are not vaccinated, do not plan to get vaccinated, and it’s been a real struggle to figure out how to overcome the objection ‘cause I think some of it is real personal, religious-based. It just feels like it’s really deeply ingrained, and almost as though nothing you could say could change their mind or spark their curiosity, or help them see what would, what some of the benefits could be on the other’s side of the vaccination.” (Transcript 9)

Figure 1.

Number of participants who mentioned theme or subtheme, stratified by physician and community leader title.

**Demographic-specific subthemes for access, apathy, mistrust, motivating factors, safety, and strategies were combined with the parent theme.

Barriers to COVID-19 Vaccine Uptake

Mistrust

We defined mistrust as doubt in and suspicion of people, organizations, and systems that engendered vaccine hesitancy. Mistrust and its subcategories (conspiracy theories, healthcare systems, demographic-specific mistrust, politicized skepticism, racism and historical injustices, and vaccine development/function) were the most cited barrier with over seventy references by participants (Supplemental Figure 1). Conspiracy theories was the most common subtheme, without explicit mention by the facilitators.

Mistrust – Conspiracy Theories

With twelve participants discussing conspiracy theories (Figure 1), many felt the various beliefs were rooted in mistrust. Specific theories included microchip implantation, foreign government interference, money-making schemes by the government or pharmaceutical companies, or genocide concerns. One participant described, “I hear a lot of, ‘They say.’ My favorite thing to say, ‘Who are they? Who are these they that are always saying, ‘They say,’ they who?’ You always have these conspiracy theories of everything from death in a few years. They’re going to die. They’re trying to clean out people to all these things. Bill Gates doing something…”(Transcript 7, CL).

Mistrust – Healthcare Systems

Six participants mentioned thirteen times that mistrust in healthcare systems created hesitancy. Many mentioned generalized mistrust of the medical system, direct challenges to science and scientific leaders, and frustration that the healthcare system functions primarily in a capitalistic role concerning the role of pharmaceutical companies developing the vaccine. One participant reflected, “Trust in the pharmaceutical industry, I had patients saying right off before the vaccines even came out, ‘I’m not taking anything from [NAME]. How can you trust them after the [NAME] incident?’” (Transcript 11, Physician).

Mistrust – Politicized Skepticism

Political tension that engendered vaccine hesitancy was cited seven times by four participants, noting that vaccine communication was impacted by the messengers, specifically those in political offices. This led to polarizing viewpoints, and concern for political motivations for vaccination support. One physician stated, “I get this sense that they think its political and the Democrats have pushed it forward and therefore it is inherently not to be trusted…” (Transcript 1, Physician).

Mistrust – Racism and Historical injustices

Seven participants cited the role of historical injustices committed against marginalized communities and medical racism impacting hesitancy. They noted that previous racist acts were mentioned by those who were hesitant. Others stated that the vaccine felt like a tool for systematic oppression, while several identified concerns about lack of racial representation in clinical trials. For some, historical injustice played a direct role in mistrust; one participant described a person experiencing incarceration, noting, “First his comment was, ‘I’m pretty sure there’s something wrong with the vaccine’ […] He was trying to figure out how it was that they were able to get access to the vaccines in the jail. ‘Well, I’m just wondering, because they never prioritized me before. That’s why I’m [in jail] because nobody ever prioritized me. Why are they prioritizing me now? There must be something wrong with this vaccine’” (Transcript 17, CL).

Mistrust – Vaccine development & function

Ten participants acknowledged concerns regarding vaccine development describing rushed processes or concern the mRNA vaccines alter DNA. One noted, “Initially I think there was a lot of hesitance from patients in general, particularly around maybe the newness of it or how quick they thought it had come out …general sense of things being experimental as opposed to established” (Transcript 4, Physician).

Access

We defined the theme of access as systematic, psychological, and material barriers that inhibited vaccination. Nine participants mentioned access concerns 18 times. Barriers included limited internet access and proficiency, distances to vaccination clinics, availability of vaccines, and poor integration of vaccination efforts into existing health clinics. Some observed that access efforts were tied to trust; for example, “There are so many layers to trust and to access. I’ve heard from enumerable patients where they would not feel comfortable going to, say, a pop-up vaccine place in a parking lot, but maybe they feel comfortable going to their local [PLACE]. …there’s some that would never get it at their local [PLACE]. …only feel comfortable getting it at their doctor’s office” (Transcript 11, Physician). Other participants felt otherwise: “I see so many other locations opening up. To me personally, there’s no reason why you can’t get the shot in terms of availability” (Transcript 8, CL).

Apathy

Nine participants mentioned apathy, or vaccine indifference, as a barrier to uptake, noting that young, healthy people’s altruism to protect the more vulnerable began to wane over time. One physician noted that vaccination was a lower priority for socially disadvantaged individuals who had to focus on basic needs like access to food. Others noted that some teenagers and elderly individuals expressed apathy regarding dying. For teenagers, the theme of fatalistic apathy was expressed: “If you meet teenagers, a Black teenage boy who lives in a low-income area… they’ve said, ‘Oh,’ a lot of them already have the colors for their funeral planned. It’s like no expectation of getting old. Or I’ve met men who are 27, 28 who suddenly have to figure out how am living my life? I never thought I would get this old. If you don’t expect to live a long time, then maybe that’s a reason not to get vaccinated… Their perception of risk is totally different than most people” (Transcript 14, CL).

Booster-specific Hesitancy

We defined booster-specific hesitancy as assessment of personal risk-to-benefit ratio that limited uptake. Participants mentioned inconsistent messaging, waning precautions, fatigue, fear of side effects, and the perception of boosters as non-essential, seventeen times. A physician noted, “This period of time where we’re looking at second boosters and more boosters—I know that somebody asked me this who’s not medical, ‘Will this drain my immune system? You keep revving it up or boosting it’” (Transcript 15, Physician). People adopted a “wait and see approach:” “I think people just are—they don’t know exactly why they need it especially since there seems to be an opening up of everything. […] I think if there’s another surge, …people might start thinking about it. …they’ll just wait until the flu season starts and get both of them at once” (Transcript 14, CL).

Categorization by Degree of Hesitancy

Seven participants acknowledged that some individuals’ specific concerns varied by degree of hesitancy. Many reflected on individuals who would ultimately become vaccinated but wanted others to go first. Others refused vaccination outright, stating, “There’s some people who know it’s good and maybe take a pause before, weren’t the first in line to sign up for it, but eventually did…” (Transcript 9, CL). A physician noted the importance of gauging this sense in clinic to tailor their messaging: “There are some people who are just no’s and they are super hard to move and they are people in the middle. And I usually know within the first couple of minutes of talking to them where they are going to be…” (Transcript 1, Physician).

Misinformation, Changing and Inconsistent Messaging

We defined this as vaccine information sources and messaging that fueled confusion, misinformation, and fear. Thirteen participants reflected on the levels of misinformation impacting vaccine perception compounded by changing and inconsistent messaging as the pandemic progressed. The internet and word of mouth were avenues of misinformation as opinions were conflated with facts. Participants identified other factors including language barriers, policy implementation lags, and strong opinions. “People get really turned off when …the message changes too much. …the [NAME] vaccine was great, and you recommended me to take it. Now, it says that it’s not good. Now, I trust you less” (Transcript 10, Physician). A community member compared information passing in communities to the telephone game, stating, “I get it from news sources, …it gets handed down and everybody else adds. It’s like the telephone game. Everybody else adds a little two inches more to the story, makes it 15 times worse than what it was” (Transcript 8, CL).

Role of Religion & Cultural Beliefs

Three CLs and one physician identified the influence of religion and cultural beliefs on vaccination status. Some mentioned that it can be a cultural belief to question any vaccine. Many felt the incorporation of religion or spiritual beliefs made an individual even more resistant, “I think some of it is real, personal, religious-based. It just feels like it’s really deeply ingrained, and almost as though nothing you could say could change their mind or spark their curiosity, or help them see… some of the benefits could be on the other’s side of the vaccination” (Transcript 9, CL). On the contrary, others noted how religion helped support vaccination, stating, “I pray about it, really get wisdom and discernment not only from the people who’re the scientists but also just, ‘God, is this a prudent thing to do?’… feeling confident that God will work through physicians again. Yes, we’ll get vaccinated” (Transcript 17, CL).

Safety

Safety concerns, notably side effects, were described by eight individuals (six physicians and two CL). Short- and long-term effects were mentioned including risk of rheumatic disease flares, severity of vaccine adverse effects, and concern regarding interaction with treatment drugs. Others noted that while parents were vaccinated, safety concerns precluded them from vaccinating their children; “‘Oh, no. I’m not vaccinating my kids. I heard it can affect your fertility.’ That’s been a really hard one to bust” (Transcript 11, Physician).

Motivating Factors and Strategies for Vaccine Uptake

Motivating Factors

We defined this theme as reasons to seek out vaccination. Nine participants described motivating factors over twenty-four times, citing safety, desire to travel or spend time with loved ones, decreased social isolation, engagement in something controllable, minimizing risk due to immunocompromised status, and fear of death/adverse outcomes (Table 4). One participant mentioned in their social circle specific reasons like “To be able to see their loved ones. That was the number one reason. To have a peace of mind… We want to have some stability of what we had before and not live in this isolation…” (Transcript 3, CL).

Table 4.

Motivating Factors & Strategies for Vaccine Uptake – Selected Quotes from Physicians and Community Leaders

Motivating Factors	“The patients who have told me ‘I’m hesitant to get this vaccine but I’m going to do it anyway because I want to protect my grandbaby.’ I’ve heard people say things like that and that can be a powerful motivator for people.” (Transcript 2, Physician) “To be able to see their loved ones. That was the number one reason. To have a peace of mind, at least in my family that was a whole thing. Some of my friends were like, ‘you can’t see me until I get vaccinated or until you get vaccinated.’ It became, we want to have – and I don’t want to call it a normal lifestyle – but we want to have some stability of what we had before and not live in this isolation that we were all placed in.” (Transcript 3, CL)
Motivating Factors  Demographic Specific	“I would say patients that are highly engaged with their health are more likely to get the vaccine. For example, if a patient in our clinic is frequently missing their appointments or they have medication adherence issues, they are the ones I’m finding to be less likely to be receptive to the vaccine. The patients who are coming to every appointment and participating in Lupus support groups and research studies, they tend to be the patients who are more likely to be vaccinated from my experience.” (Transcript 2, Physician) “But I think a lot of—almost everybody, almost every Black person I know knows somebody who died from COVID-19. People are more willing to get vaccinated because they know people who have died. I think it has a lot to do with what are people’s expectations of how long they expect to live.” (Transcript 14, CL)
Strategies	“I think if you can incorporate real world examples, I think that will be really powerful for patients. I’ve had patients where I’ve said ‘Look, I’ve gotten this vaccine, my family members – I’ve encouraged them all to get it. We’ve all done fine’ and they say ‘Ok, I’ll get it. Promise me I’m not going to die.’ I think people appreciate that, me sharing personal stories with that. I think people also really appreciate you letting them know that you care deeply about them and their outcomes. Some people are kind of angry when you bring up the vaccines and I say ‘the only reason I’m talking to you about this is because I think it’s really important. I care deeply about you and your health and I do not want to see you end up in a bad situation.’” (Transcript 2, Physician) “They’re still not inclined to be vaccinated. We stay in conversation. That’s really the thing I can say. I think it becomes even less urgent as time goes by. I tell you the thing that was most important is that people felt respected, whatever their decision was, and we—that was really, really important to us. We are not going to isolate people and dog them if you didn’t.” (Transcript 17, CL) “How do you convince someone who’s totally dug in, right? But if it came from someone outside the medical field and someone they knew in another sphere and trusted, they certainly have a way better shot than I did.” (Transcript 1, Physician) “I think the benefit of getting the vaccine and learning about the vaccine. What are the pros and cons of this vaccine? And make it so they can understand it, not make it high tech, high scientific studies. Make it real.” (Transcript 3, CL)
Strategies  Demographic Specific	“I typically bring up the fact we are vaccinating patients with their particular condition in our clinics and those patients are doing fine and they’re not having any problems. For example, if it’s a patient with lupus I’ll say, ‘We’ve had many patients who have Lupus who are seen in our clinic who have gotten the vaccine and they’ve done great and there’s not been any problem relating to their lupus or any adverse effect from the vaccine.’” (Transcript 2, Physician) “My impression is that when people are vaccine-hesitant or vaccine opposed because they see it as a dominating—another example of systemic oppression that allowing—respecting their opinion or showing respect and acknowledging some concerns—not validating things that are clearly not based in fact, but validating concerns like, ‘I understand your concern about the pharmaceutical industry based on this that and the other. I understand that vaccines have been used in various studies against Black individuals unethically.’ I think that acknowledging those things is important.” (Transcript 11, Physician)

Strategies

We defined this theme as effective communication, psychological, and material means to disseminate vaccine-related information to community members. Strategies ranged from personal storytelling, open-ended questioning, empathetic acknowledgement of concerns, iterative conversations, and an optimistic approach with a targeted integration of data (Table 4). Many spoke of managing expectations and having a goal. Physicians identified the importance of roles like POLs with one mentioning, “How do you convince someone who’s totally dug in? …if it came from someone outside the medical field…someone they knew in another sphere and trusted, they certainly have a way better shot than I did” (Transcript 1, Physician).

Considerations for Future intervention Design

Participants were asked to identify strategies that would aid in designing a future vaccine related intervention using the POL model (Table 5). Discussion points included ideal POL traits and the ability of physicians to identify patients to be trained as POLs. While not explicitly asked, two POLs expressed potential concerns, which were explored as a theme.

Table 5.

Considerations for POL Intervention Design – Selected Quotes from Physicians and CLs

POL Traits	“I think in this particular sphere, being a great leader is really important. In order to be successful in changing people’s minds, you have to be really able to listen to what people are saying and interpret that. I would say having an outgoing personality but a sensitive approach. Meaning you’re not bombarding a patient with a bunch of information and you’re approaching it softly is what I would say and great people skills. Of course, that is part of being a community leader as well.” (Transcript 2, Physician) “I think they need to be humble. They need to be approachable and honest. If you break down telling your story, it’s okay. If you say I don’t know the answer, I’ll get back to you, it’s totally okay. If you give example of what you’ve gone through, people can relate. So they can say ‘I know somebody, or I’ve been through that.’” (Transcript 3, CL)
Physician Knowledge of Patient Social Networks	“I think I would have to say I get a sense if they are isolated or not, but I don’t know the details of their social network. I just know who I don’t know.” (Transcript 1, Physician) “Some of my patients I know a lot about their families because they tell me, and they’re more open about it and maybe I’ve seen them for longer and we just have that relationship. Other patients I don’t know much about their life outside of their health.” (Transcript 2, Physician)
Concerns about being a POL	“I think for me, the hump that I have to get over is it’s tiring, it becomes very tiring. It’s depressive. It puts me in a state, and I think for me what I have to do is change my mindset because I’m at this point I can’t do it anymore cause I’m so tired of the stupidity. It’s wearing, it takes its toll on you.” (Transcript 5, CL)

POL Traits

Eleven participants identified effective POL traits as humility, empathy, warmth, honesty, and sensitivity; “…they need to be humble…approachable and honest. If you break down telling your story, it’s okay. If you say I don’t know the answer, I’ll get back to you, it’s totally okay” (Transcript 3, CL). Others voiced the importance of being knowledgeable about vaccine development, clinical trial data and side effects. Many noted that community leaders could play an important role engaging target populations.

Physician Knowledge of Patient Social Networks

Identifying potential POLs’ social networks is integral to creating an outreach social network for future vaccine dissemination efforts. When asked, physicians noted this knowledge was obtained through direct questioning, especially for pediatric patients, through patient volunteered information based on patient-healthcare worker rapport, or by proxy of perceived coping mechanisms/supports. Many acknowledged that this knowledge is not consistently understood, with one stating, “How often are [physicians] digging into their social situation or their life outside their health? …some physicians do that more so than others” (Transcript 2, Physician).

POL Concerns

While not specifically asked, two POL/community leaders offered a perspective regarding potential concerns about being a POL promoting vaccine uptake including repeated exposure to unvaccinated individuals while being immunocompromised, fear of losing or damaging personal relationships, and ethical considerations about promoting vaccination to staunch opponents to vaccination. One shared, “You would think that the relationship with this person that says, ‘I will get sick if you do not do this,’ would be compelling, but that’s also a very traumatizing thing to say…especially if that doesn’t have an outcome that’s positive ‘cause…that person doesn’t care” (Transcript 16, CL). Considering the well-being of the POLs was highlighted as central to plans for a future intervention.

Discussion

With the disproportionate burden of COVID-19 infection, adverse outcomes and vaccine hesitancy among people of color with rheumatic diseases, this qualitative study sought to better elucidate perceived barriers and facilitators to vaccine uptake in Black communities in Chicago and Boston.¹¹ Both physician and community-based participants identified sources of vaccine hesitancy including mistrust, apathy, inaccessibility, safety concerns, inconsistent messaging, and misinformation. Mistrust was noted to be a strong barrier buoyed by conspiracy theories, politicized skepticism, mistrust of health care systems and vaccine development and function, along with historical injustices and racism. Approaches for increasing vaccine uptake centered on information dissemination from trusted and empathetic social network members with an emphasis on lifestyle benefits gained from vaccination.

Our findings regarding barriers to vaccination among Black individuals with rheumatic conditions are congruent with previous studies among the general Black population.^21–25 A recent qualitative study of Black churchgoers from a single congregation in Boston found lack of trust, rushed development, fear of side effects, history of medical mistreatment and a perception of low risk as reasons for vaccine hesitancy in this group.²⁶ Furthermore, a qualitative study assessed vaccine hesitancy factors for seventy members of racially and ethnically minoritized communities at high risk for COVID-19 and found misinformation, politicization, apprehension based on historical inequities, access barriers and a need for trusted messengers to be shared sentiments.²⁷ Additionally, studies in patients with SLE and other rheumatic conditions highlight concerns regarding vaccine safety, side effects, and impact on underlying rheumatic disease in patients with vaccine hesitancy, similar to our findings.^28–34 Our study additionally explored COVID-19 vaccine booster hesitancy, highlighting inconsistent messaging, waning precaution vigilance, fatigue, fear of prior or more severe side effects along with the perception of boosters as non-essential.

This qualitative study explored perceived barriers by physicians, community leaders and established POLs. Limitations include a small sample size, although thematic saturation was reached, with the largest percentage of participants being female and from Boston. Black communities are not monolithic, and one set of perceived barriers or strategies will not be generalizable to all individuals identifying as Black as evidenced by the heterogeneity reflected in participant responses from two U.S. cities. While our interviewees were made aware of the overarching study aims (to understand and increase COVID-19 vaccinations/boosters overall and specifically among Black individuals with rheumatic conditions) and individuals identifying as Black/African American were oversampled (10/18 interviews), perspectives presented may not only represent views of individuals in these communities, and at the same time, may not be broadly applicable both within and outside of Black communities. We specifically included leaders of organizations and physicians serving Black communities as well as community leaders who identified with various Black cultural backgrounds to incorporate diverse life experiences. We aimed to represent the community of individuals with rheumatic/musculoskeletal conditions (12/18 interviews), but also to have a broader understanding of perspectives from individuals who interact with this community. Therefore, some quotes may be representative of more general opinions beyond those specific to individuals with these conditions. We did not choose to ask participants if they were fully vaccinated, though many community leaders spoke of their experiences receiving the COVID-19 vaccine and physicians were required per workplace mandates. Additionally, the interviews were conducted virtually from November 2021 and October 2022 and thus the state of vaccination efforts, messaging and access varied during this time. There are strengths and limitations inherent to our use of qualitative over quantitative methods. Quantitative studies can reveal population-level data on vaccine uptake and potentially reasons for vaccine hesitancy; however, they do not allow for in depth, nuanced data on reasons behind vaccine hesitancy. While surveys may have provided information from a larger number of participants, the in-depth exploration of experiences to facilitate a future intervention would not have been possible. While we considered holding focus groups instead of individual interviews, we chose the latter to elevate each individual’s unique perspective on a sensitive topic, and to allow us to accommodate individuals working tirelessly in the midst of ongoing COVID-19 waves who would have been missed with a longer focus group meeting at a designated time.³⁵

Generalized mistrust, conspiracy theories, mistrust of healthcare systems and vaccine development and function, politicized skepticism, racism and historical injustices were the most cited barriers to vaccine uptake. A national survey showed the importance of trust in the vaccine development process; vaccine intent was 75% higher among those with high versus low trust.³⁶ Furthermore, another national analysis highlighted the role of structural racism as Black respondents were more likely to have vaccine hesitancy while controlling for personal traits like stress, conspiracy thinking and medical trust.³⁷ Addressing structural racism through informed interventions that acknowledge past and current racism and mistreatment could help improve vaccine uptake in Black communities. Our findings suggest that trust restoration must be forefront in strategies to improve racial equity in vaccine uptake through community-driven interventions, meaningful community investment and the building of community power through direct engagement with Black communities.^38,39

The experiences and perspectives of participants will be used to develop a curriculum to train POLs on COVID-19 vaccine and booster safety and hesitancy in communities of Black individuals with rheumatic conditions with a racial justice lens. We hope these perspectives will help efforts to reduce mistrust and fear. In building this intervention, our key informants highlighted that POLs should engage in personalized, iterative conversations, employing humility, empathy and curiosity. Care must be taken to avoid creating adverse effects related to moral injury for trusted messengers. This qualitative work will directly inform a planned randomized controlled trial to assess whether this community-academic partnership intervention rooted in racial justice with acknowledgement of structural racism will improve COVID-19 vaccine and booster uptake among Black individuals with rheumatic diseases.

Significance and Innovations.

• This study uniquely leverages qualitative interviews from both community members and physicians from two U.S. cities to understand COVID-19 vaccine and booster hesitancy and to develop strategies to promote COVID-19 vaccine uptake, specifically among Black individuals with rheumatic conditions.

• Misinformation and mistrust stemming from racism and historical injustices were uncovered as central themes that need to be addressed by vaccine/booster hesitancy programs to facilitate uptake and reduce racial disparities.

• These interviews with key community and academic stakeholders will inform a robust, tailored community-based intervention to promote vaccine and booster uptake among individuals with rheumatic and musculoskeletal conditions, with a focus on Black and African American communities in Chicago and Boston.