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COVID-related deaths in Black and Latinx communities are double that of their white counterparts, relative to population share. During the pandemic, racial and ethnic disparities have been found in vaccination rates and vaccine access in these very same communities.
A recent study co-led by Yale researchers examined factors that promote and obstruct vaccine access and acceptance as well as what can be done to promote more equitable access and uptake of the COVID-19 vaccines.
For the study, the researchers and community partners led a series of focus group discussions in March 2021 with 72 individuals from New Haven who identify as Black and Latinx about their experiences accessing the vaccine and factors that influenced whether they received it. In their findings, published in JAMA Network Open, they identified three major themes: pervasive mistreatment of Black and Latinx communities that created distrust; the importance of informing trust through choice, social support, diversity, and trusted messengers; and structural barriers to vaccine access.
Participants pointed to the disparate health outcomes in Black and Latinx communities and dismissal of their health concerns as drivers of distrust of the healthcare system. Even when they did seek out COVID-19 vaccines, some participants described how difficult it could be to obtain them, noting frustration with sign-up processes and a lack of support for those who speak Spanish.
The research was led by the Community Alliance for Research and Engagement (CARE)—co-housed at the Yale School of Public Health and Southern Connecticut State University—and included partners throughout the New Haven community.
In an interview with Yale News, three members of the research team—Lilanthi Balasuriya, a National Clinician Scholars Fellow at the Yale School of Medicine, Jessica Ainooson, a graduate student at the Yale School of Public Health and a CARE research assistant, and Bernard Macklin, the vaccination outreach coordinator at CARE—described what they learned during these community conversations and what it will take to build trust in communities hardest hit by the pandemic. This interview has been condensed and edited.
What did you find were the main drivers or limitations of vaccine acceptance?
Jessica Ainooson: What stood out in the focus groups is that access is not just about getting to the vaccination site, but it’s a continuum about how people can access information, transportation, communication, and resources. It’s about increasing access to residents who are disproportionately impacted by structural barriers.
And access has to be multilingual in a city like New Haven that is home to a diverse population. Participants discussed that they had to rely on family members to get information or they had to act as a translator for their relatives who didn’t speak English. This really highlighted the challenges and disparities for residents who did not speak English as their primary language.
What also stood out was the lack of trust between the greater health system and the local community, which manifested as a barrier to vaccination but also a general concern for interacting with the health care system. Because of this, New Haven residents felt like continued communication, clear messaging, and partnership beyond the pandemic is the way forward.
Bernard Macklin: When we did this project, there wasn’t a lot of information out about the vaccines, and people didn’t have immediate access to the information that was available. When information came out it wasn’t readily available to the Spanish-speaking community in New Haven. Clinics were not set up in the Spanish-speaking communities right away. Eventually, it did happen. But when we wrote this paper, this wasn’t something happening right away.
A main conclusion of the study was how important it is to seek community-informed insights into this type of public health challenge. How did you elicit these kinds of insights for this study?
Macklin: At CARE, we ordinarily go into the community—knocking on doors, face-to-face interactions, webinars, events—to find people, provide them with factual information, and, in this case, set up listening sessions. In the listening sessions, you get information from people, and then you create a campaign from there that deals specifically with the areas that interest them.
What were some of the responses that stood out to you during the focus groups?
Lilanthi Balasuriya: One person spoke about the importance of having a choice during their vaccination process. The participant described having a list of different vaccines and being able to select the vaccine that they wanted. Even having the choice of which chair or lane to go to—those choices matter.
Macklin: For me, I go back to one young Black woman who said she felt more comfortable when she walked into the clinic and saw people other than Black people. And that made her more comfortable in getting vaccinated because she realized it just wasn’t about Black people, it was about people in general getting vaccinated.
Ainooson: People were really honest, not only about their feelings about the vaccine but in sharing stories that had happened to them or people that they knew. And in that sense, [the focus groups] felt like a healing space.
Why is it important to create space for this type of community engagement?
Ainooson: To make sure people are getting the information they need. In the focus groups, people said they had heard a lot of different messages and the messages weren’t consistent. And they wanted to know that there was somewhere they could go to get accurate information, that there was someone they could trust. In the long term, this work is so important beyond the COVID-19 vaccine. It’s really about giving everyone an equal opportunity to live a healthy life.
Macklin: I’m a Black male, and I love being able to share factual information that will affect lives with people who look like me. The grant we received from the [Centers for Disease Control and Prevention] gave us this opportunity to provide this information to the community.
Balasuriya: Building relationships and partnerships with the community must be an ongoing endeavor throughout the pandemic and beyond it. The many different communities we have here in New Haven know their needs and how to best use the resources better than we ever could. We must continue to listen to our communities’ voices and partner together to find the most innovative solutions both during the pandemic and beyond.
What sort of feedback did you get about this outreach from the focus group participants?
Ainooson: Sometimes people would linger after the focus group discussions and continue talking with us. One woman mentioned that she was going to talk to her son, who was resistant, about getting the vaccine. Another time, someone called after a focus group to say that they looked up more information [about the vaccine] and scheduled their first vaccination appointment. It was such a pleasure to hear that just having these focus groups could really make a difference for people and that they thought it was valuable.
Macklin: There is so much focus on the negative sometimes. But some of the people I talked to were just happy to hear something positive, something that was real. And people felt great about being able to express themselves without being judged.
What are your next steps?
Ainooson: This work is ongoing. We’ve incorporated listening sessions with healthcare providers. We’ve conducted another round of focus groups, and we’ll probably do another one in early 2022. After we did the first focus groups, we had an informative webinar in both Spanish and English with community members to let them know about our findings. It was really important to share it. That’s part of building trust.
Macklin: And we need to remain patient. That’s critical in this. We’re realizing that because there have been so many years where there has been mistrust, too many years of harmful things happening in our communities, that it’s going to take time to build that trust.
Disparities in vaccine acceptance
The research team suggested possible strategies to improve vaccination access and acceptance in communities hardest hit by the pandemic which are listed in full in their paper, some of which include:
- Building longitudinal and long-term partnerships with trusted community organizations
- Recruitment of diverse health care staff and increasing the pipeline of diversity in health care
- Making vaccines accessible to all by eliminating sign up processes
- Having convenient hours for vaccination (evenings and weekends) in trusted locations
- Providing information in multiple languages
- Eliminating paperwork requirements that may serve as barriers
- Having paid time off for employees for the vaccination and after the vaccination
- Continued engagement with communities to inform the vaccination process
Mallory Locklear, Yale University