The complexities of 'trust' in the context of COVID-19 vaccination choices among Black women in Alameda County, CA.

The 20 participants in this study were aged 30 to 70 years (see Table 1 ). Reflecting California’s effort to expand Medicaid access under the Affordable Care Act (Dietz, 2022), all but one had health insurance. Seventy percent reported having taken some college courses or graduating from college. Most participants were struggling to make ends meet on low incomes: 50% reported having a disability and being unable to work, 15% were unemployed, 15% were retired, and 20% were employed part-time or full-time. The majority (75%) of participants also reported having at least one chronic condition with asthma, nerve damage, and arthritis being reported most frequently (see Table 2 ). Seventeen (85%) of participants identified as Black. We included data from the three participants who did not identify as Black in this analysis centering Wilson’s work because the perspectives and narratives they shared in their interviews were closely aligned with those of Black participants. From our reading of Wilson, we believe this underscores one of her core arguments – namely, that structural factors and social conditions, including but not limited to systemic racism, strongly shape people’s responses to medical services and interventions. By December 2022, 85% of Alameda County residents had received two doses of the COVID-19 vaccines, which was widely accessible through clinics and pharmacies ( Vaccination and Testing , 2022 ; Vaccination data , 2023 ). At the time of their interviews (March 15 to April 8, 2022), 70% of participants had chosen to be vaccinated against COVID-19 and 30% had chosen not to be vaccinated. Figure 1 presents the distribution of participants’ vaccine choices and whether they had concerns about the COVID-19 vaccine. Among the four participants who were employed at the time of their interview, three were required to be vaccinated as a condition of their work. One of them expressed concerns about the vaccine and said her decision was based solely on her desire to remain employed. However, the other two participants said that they would have chosen to be vaccinated even without the mandate from their job. No one reported choosing to leave employment instead of getting vaccinated. All participants stated that they were able to easily access COVID-19 vaccination services either through their primary care providers (PCPs) or free community clinics (including drive-through and open-air ‘pop-up’ clinics). In alignment with Wilson’s argument, our analysis of women’s vaccination choices found that participants consulted a variety of information sources and considered a range of factors when making COVID-19 vaccination decisions. As Wilson (2022 p. S16) states, a Black feminist bioethics acknowledges that ‘due to structural, racial, and gendered injustice,’ women of color are likely to be placed in positions of socio-economic and medical vulnerability, including having care-giving responsibilities for other vulnerable people. ‘In this context,’ Wilson (2022) notes, ‘asking questions about vaccine safety, efficacy, and the rationale of various vaccine distribution schema isn’t irrational or silly; it is prudent.’ In the following, we first review how participants obtained information about COVID-19 and the vaccine and their adoption of strategies to prevent infection. We then discuss two key factors that women identified as strongly shaping their vaccination choices: chronic health conditions and connections with family members. We end with participants’ reflections on broader structural conditions that affect Black people’s vaccine decision-making. Table 3 ( Appendix 1 ) presents key themes, illustrative quotes, the number of participants represented for key themes. Nearly all study participants reported consulting multiple sources for information about the COVID-19 virus and vaccine: ‘I watch the news, I read the papers, I speak to other people, all sources, even the Internet sometimes’ (V2224). Many participants specified that they turned to television news programs, social media, or online resources for COVID-19 information, and expressed making active efforts to find sources they perceived as valid, rather than passively consuming information that appeared before them. As one woman explained: I go to the World Health Organization [WHO], I go to CDC [Centers for Disease Control], I go to their actual website and read the things that I need to read … they’re not CDC, they’re not WHO for nothing, you know. Their name, they’re prominent and their name stands for something for a reason. … I’m not saying that that’s all the truth, but still, I feel like as far as getting the truth that’s going to be the closest to the truth that I am going to get, is to read it from the actual source or companies or whatever it is that I’m researching on. I don’t deal with Wikipedia, I don’t deal with magazines … Because I feel like third parties and things like that, that’s not coming from the horse’s mouth. (N2109 1 ) I go to the World Health Organization [WHO], I go to CDC [Centers for Disease Control], I go to their actual website and read the things that I need to read … they’re not CDC, they’re not WHO for nothing, you know. Their name, they’re prominent and their name stands for something for a reason. … I’m not saying that that’s all the truth, but still, I feel like as far as getting the truth that’s going to be the closest to the truth that I am going to get, is to read it from the actual source or companies or whatever it is that I’m researching on. I don’t deal with Wikipedia, I don’t deal with magazines … Because I feel like third parties and things like that, that’s not coming from the horse’s mouth. Participants also reported receiving written and oral information about COVID-19 and the vaccine from medical providers, family members, and faith leaders. The context of women’s relationships with those institutions and individuals influenced how they interpreted this information, and they used the same critical lens to evaluate whether to believe and follow the guidance offered as they did to evaluating the validity of media sources. As one participant who initially had concerns about getting vaccinated expressed, this process could feel empowering: [When I receive information from someone I know] they always got their own personal beliefs around the crap. I want to know where you’re getting this information from! [laughter] Most of it is not really from a source, it’s really from a personal standpoint and it’s like I am not on that hype anymore. I want to get it from the source instead of a personal belief. … I’m an adult and I could do my own research, and read about it on my own, and so that actually helped me also with other things in my life, too, to do my own research about things. …I had to pick and choose what I wanted to believe within myself and what I wanted to believe with society. … So that actually also motivated me to be like, okay, cool, I know about this COVID-19 stuff, I know what these people are saying about it [and] I’m actually going to do something different this time, I’m going out, I’m Black, I’m getting a [COVID-19] test. (V2008) [When I receive information from someone I know] they always got their own personal beliefs around the crap. I want to know where you’re getting this information from! [laughter] Most of it is not really from a source, it’s really from a personal standpoint and it’s like I am not on that hype anymore. I want to get it from the source instead of a personal belief. … I’m an adult and I could do my own research, and read about it on my own, and so that actually helped me also with other things in my life, too, to do my own research about things. …I had to pick and choose what I wanted to believe within myself and what I wanted to believe with society. … So that actually also motivated me to be like, okay, cool, I know about this COVID-19 stuff, I know what these people are saying about it [and] I’m actually going to do something different this time, I’m going out, I’m Black, I’m getting a [COVID-19] test. Regardless of vaccination status, all participants reported that the sources of information they consulted substantiated the existence of the COVID-19 virus and all participants took measures to prevent becoming infected by following public health guidelines. Women discussed routinely wearing masks and washing their hands when they took public transportation or interacted with people outside of their household, and many described choosing to not leave or let others into their residence as a way of preventing infection risk. A few women also mentioned strengthening their bodies through eating nutritious foods, getting regular exercise, or taking vitamin supplements as strategies for reducing their risk of becoming seriously ill if infected with COVID-19. Nearly all participants (85%) had tested at least once for the virus, and only 30% reported having been infected with COVID-19 at the time of their interview. When talking about prevention measures, participants tended to give considerable weight to non-pharmaceutical strategies regardless of their vaccination status. As one vaccinated woman commented, ‘I just don’t think much of the vaccine. I think that the masks and the handwashing and the social distancing was far more effective than that damn vaccine’ (V2224). Indeed, women tended to assess their risk of COVID-19 infection primarily in terms of their exposure to other people, with both vaccinated and unvaccinated participants noting that they were at low risk of infection due to spending most of their time alone and following public health guidelines. For example, a participant who chose to not be vaccinated due to concerns about possible severe side effects said that she mainly interacted with members of her household and took precautions when she left home: ‘When I go to a grocery store or something I put a mask on. I’m not working [and therefore not exposed to coworkers or the public on a daily basis]’ (N2151). Meanwhile, several women who had chosen to be vaccinated said they felt they were at medium-to-high risk of infection due to needing to take public transportation, residing in crowded single-room occupancy hotels, or interacting with family members who were exposed to other people through work, childcare, or living conditions. All in all, the careful consideration women gave to evaluating the validity and reliability of sources of COVID-19 information and their adoption of multiple prevention strategies indicate their strong desire to protect their health. As discussed next, many participants situated these efforts in the context of the ongoing management of chronic conditions. When asked about the reasoning behind their vaccination choices, most participants spoke about previous experiences with healthcare systems and providers, as well as prior decision-making around health issues. For some women, this dated back to childhood experiences of receiving vaccinations. For example, when asked if she was concerned about getting vaccinated, V2005 responded: No, I wasn’t. When I was growing up my mother and father, we had all of our shots and the only thing I ever caught was chicken pox. So since I had been vaccinated with all the mandatory things that we needed during that period I wasn’t afraid. I want to make sure that I don’t catch anything from anybody, so no, I was ready to get my shot. No, I wasn’t. When I was growing up my mother and father, we had all of our shots and the only thing I ever caught was chicken pox. So since I had been vaccinated with all the mandatory things that we needed during that period I wasn’t afraid. I want to make sure that I don’t catch anything from anybody, so no, I was ready to get my shot. With three quarters of the interview sample coping with chronic medical conditions, many participants had extensive experiences navigating healthcare information and systems and were in regular contact with medical providers. For some women, this meant that they actively turned to their providers for COVID-19 information and guidance: ‘I went to my doctor [for information], period. … She cares for me, and so when I have something going on that’s not right, I call her’ (V2097). For others, this meant that their providers reached out to them when the pandemic hit: ‘The doctors, they send little pamphlets. And where I live, they always, either they come to the door and bring you little information or they send it in the mail’ (V2087). All participants who reported receiving information about the COVID-19 vaccine from medical providers indicated that their providers encouraged them to get vaccinated. Women’s prior experiences with their providers and healthcare systems overall played a role in whether they chose to follow this guidance or not. Participants who had strong rapport with their providers tended to perceive their advice as valid. One woman who was concerned about the vaccine and whose family members encouraged her to get vaccinated decided to do so upon the recommendation of the PCP managing her care for chronic pain: ‘I trust my doctor and I trust my family, some of my family members. But I would trust the doctor more because I feel like my doctor is very thorough and I really like her and I’m going to trust what she tells me’ (V2140). Participants did not always identify the racial or ethnic identity of trusted providers, but V2140 highlighted that her PCP was particularly credible because she could speak from the perspective of being a Black woman: ‘Both my doctors are Black, and [my PCP] said, “Yes, for us [Black women] I think that it’s a good idea for us to get [vaccinated].”‘ By contrast, participants who had lost confidence in their providers through previous experiences doubted the legitimacy of their advice. One woman who chose not to be vaccinated directly connected her decision to a prior racialized interaction with her PCP; when asked to elaborate on her statement that she did not believe in the vaccine, she replied: Because of how they treat us as Black people. I went to the doctor and I had high blood pressure and my doctor, she was prescribing me this medicine and the medicine was supposed to help my blood pressure, but really and truly it was giving me a stroke. I noticed that every time I took this medicine it would swell up my face, my mouth, my tongue. And so I went to the doctor and I told her this. The lady [doctor] told me that she knew this was happening to Black people. Well, I felt like if you knew it why you would prescribe it to me? Why would you prescribe something to me that would kill me? (N2000) Because of how they treat us as Black people. I went to the doctor and I had high blood pressure and my doctor, she was prescribing me this medicine and the medicine was supposed to help my blood pressure, but really and truly it was giving me a stroke. I noticed that every time I took this medicine it would swell up my face, my mouth, my tongue. And so I went to the doctor and I told her this. The lady [doctor] told me that she knew this was happening to Black people. Well, I felt like if you knew it why you would prescribe it to me? Why would you prescribe something to me that would kill me? Having a sense of coordinated care led some participants to embrace the COVID-19 vaccine as part of a multi-pronged strategy for staying healthy while living with chronic conditions. For example, one woman described being well-connected to comprehensive health and mental health services, noting that the pandemic was difficult because she had previously enjoyed seeing her providers in person. When describing her healthcare team, she talked about accessing several avenues of care including her PCP, other doctors in her PCP’s office, and the emergency department when she experienced breathing issues related to chronic obstructive pulmonary disease (COPD). She did not express concerns about the vaccine and linked her decision to be vaccinated to a sense of increased vulnerability to COVID-19 due to her chronic conditions: ‘[I got vaccinated] because I wanted to protect myself. I have a low immune system, I have osteosis arthritis, rheumatoid arthritis, scoliosis, [and] real bad bones’ (V2176). Similarly, another participant living with COPD noted that although she had previously experienced severe reactions to the flu vaccine, the risk of potentially being infected with COVID-19 took precedence over the risk of suffering another poor reaction: ‘I already have a lung disease so if I get sick… I could die. … I was okay with getting [vaccinated] because I didn’t want nothing else’ (V2091). Although having pre-existing conditions motivated some participants to get vaccinated, others raised concerns about potential negative interactions with their chronic health issues and chose to wait for more research on long-term effects. One woman explained that she would consider being vaccinated in the future, but did not feel comfortable doing so currently: I get lockjaw a lot. And I get like random spasms like in my face and stuff, like muscle spasms and just stuff like that with my central nervous system. I also have IBS [irritable bowel syndrome], which comes from the gut that is connected to your central nervous system, … there’s even certain medications they’ve given me for these things that I have and I don’t like the way it makes my head feel, I don’t like the way it makes my body feel. So honestly, I don’t like medicine. (N2014) I get lockjaw a lot. And I get like random spasms like in my face and stuff, like muscle spasms and just stuff like that with my central nervous system. I also have IBS [irritable bowel syndrome], which comes from the gut that is connected to your central nervous system, … there’s even certain medications they’ve given me for these things that I have and I don’t like the way it makes my head feel, I don’t like the way it makes my body feel. So honestly, I don’t like medicine. In sum, participants weighed decisions about the COVID-19 vaccine within the context of their relationships with medical providers, experiences receiving healthcare, and ongoing health needs. We turn next to how close relationships also factored into these decisions. As discussed above, participants received information about COVID-19 and the vaccine from family members and other close relations. Similar to their conversations with healthcare providers, the context of women’s relationships with these individuals influenced their interpretations of this information’s validity and reliability. They gave more credence to recommendations from people who had a proven track record of providing sound guidance. For example, V2156 had concerns about the safety of the vaccine and an overall mistrust of pharmaceuticals but explained that she wound up choosing to get vaccinated due conversations with her sister: I always trust my sister, she always gives me good advice. She’s like a mother to me and, you know, I prayed and asked God as well but…I always listen to my sister. She may be wrong sometimes, [laughter] but you know, most of the time I listen to her. I always trust my sister, she always gives me good advice. She’s like a mother to me and, you know, I prayed and asked God as well but…I always listen to my sister. She may be wrong sometimes, [laughter] but you know, most of the time I listen to her. Other participants also connected their choice to get vaccinated to persuasive conversations with family members and close relations. When asked what prompted her vaccination choice despite her initial concerns, V2224 responded: ‘My mother, my family kept saying get it, get it, get it, you know, my friend, everybody, and it was free, it was around the corner at the church they were doing it.’ By contrast, N2110 perceived a distance between her own experiences of substance use and incarceration and those of family members in high-status occupations, whom she described as ‘prominent.’ She had strong concerns about the COVID-19 vaccine and chose not to receive it despite multiple family members urging her to do so: ‘My brother’s a doctor, he’s an orthopedic surgeon, and he has had his vaccine. My uncle, he’s a pastor and he has had his vaccine. So all the prominent people in our life have had their vaccine. And we’ve been chickening out.’ Notably, no participants identified that they had intended to get vaccinated and then changed their mind due to family members’ influence. For some women, a desire to spend time with and protect the health of their loved ones motivated them to get vaccinated despite having concerns about the vaccine. As V2087 expressed, ‘Well, the main reason [I got vaccinated] was for my granddaughter and my grandson…just keep myself and my family together.’ This was not a decision that she took lightly, given that she ‘really had hesitations because it’s against my religion [to get vaccinated].’ This ambivalence was underscored by the participant’s choice to receive the two-dose COVID-19 vaccine regimen but to decline the boosters because ‘These [vaccines I already had] should work by now, I just can’t destroy my body anymore.’ Similarly, another participant noted that she chose to be vaccinated to protect her elderly mother, whom she saw regularly when she accompanied her to medical appointments or dropped off groceries. This participant also expressed concerns about the vaccine, in her case due to unknown long-term side effects: ‘I was really kind of scared at first. And still, I’m still skeptical because I don’t know the side effects [the vaccine might have]’ (V2207). When describing conversations with family members about the COVID-19 vaccine, many participants indicated that it was common for people in their networks to have differing perspectives. In contrast to the highly polemical tone characterizing the national discourse around vaccination, most women normalized these differences of opinions and indicated understanding the reasoning of the people they loved. For example, V2156 (who, as described above, talked with her sister about her own vaccine concerns and then decided to get vaccinated), explained that her son’s girlfriend, who was the mother of her grandchild, had taken a strong stance against the vaccine. Although she disagreed with that perspective, she observed that the link between the information the younger woman was consuming and her vaccination beliefs was parallel to her own process of consuming and believing in different sources of information: [My son’s girlfriend is] very adamant on it’s a trap to be vaccinated… There’s a lot of people that do documentaries and different things on Facebook and Instagram, because now that we got these phones, people [are] getting their own businesses, they’re doing documentaries, you know, you learn how to put your eyelashes on, you learn to clip your toenails right, so she done heard her some information and she believe it. Just like we hear information about the vaccine and we believe it, and some people don’t [believe that information]. (V2156) [My son’s girlfriend is] very adamant on it’s a trap to be vaccinated… There’s a lot of people that do documentaries and different things on Facebook and Instagram, because now that we got these phones, people [are] getting their own businesses, they’re doing documentaries, you know, you learn how to put your eyelashes on, you learn to clip your toenails right, so she done heard her some information and she believe it. Just like we hear information about the vaccine and we believe it, and some people don’t [believe that information]. Similarly, V2077, who was not concerned about getting vaccinated, explained that one of her three daughters had strong reservations. She recounted talking with her daughter about the vaccine: [My daughter said] ‘Well, I think they’re trying to kill us off. … You don’t know what they’re putting in there, Mom.’ This participant tried to reassure her daughter by describing her own experience: ‘Whatever you’re talking about, honey, it didn’t happen to me, all I had was a headache for a minute [after receiving the vaccine]. After then I went about my business.’ V2085 also took a matter-of-fact approach with her three adult children and multiple close friends who had chosen not to be vaccinated. Although her faith reassured her about getting vaccinated as a requirement for her job (‘I wasn’t hesitant, I felt okay because I was like, I’m going to let God just lead me through this’), when encouraging other people to get vaccinated, she concentrated on the practicality of finding work and reminded them that many employers mandated vaccination. V2037, who worked in a COVID-19 clinic and was responsible for administering the vaccine once it was available, also had one adult son who was not vaccinated: ‘He just thinks that it’s something that the government has come up with to try to control us and he’s just like, “I don’t want that, I think it’s the mark of the beast and [laughter] you don’t know what the outcome is going to be from that, are they going to use something to control you?”‘ This participant noted that she urged people in her family and social circles to get the vaccine to protect themselves and others, telling them: ‘You got to become unselfish and selfless in order to realize that it’s important.’ She observed that when having these conversations, ‘I try to stay on a positive level and try to encourage people to do what’s healthy and safe for us all.’ Participants who chose not to get vaccinated also described working through differences of opinion with their families and loved ones. N2014’s entire family was infected with COVID-19 very early in the pandemic, and she was adamant that they all get tested regularly after that experience. At the time of her interview, her husband had been vaccinated because his job required it, but she was not comfortable doing so out of concern for potential interactions with her multiple pre-existing conditions. Her husband encouraged her to get vaccinated, at one point presenting her with a hypothetical situation in which she needed emergency medical attention: [He said] What if you went to the hospital and there was something wrong with you and you didn’t know what it was and the doctor came to me and said, ‘Sign this paper so that we could do everything we have to do to keep your wife alive.’ He was like, I’m going to sign it and I’m not going to ask questions about what they’re giving you or what they’re putting in you, all I want is for you to stay alive. [He said] What if you went to the hospital and there was something wrong with you and you didn’t know what it was and the doctor came to me and said, ‘Sign this paper so that we could do everything we have to do to keep your wife alive.’ He was like, I’m going to sign it and I’m not going to ask questions about what they’re giving you or what they’re putting in you, all I want is for you to stay alive. N2014 understood her husband’s argument, but they amicably agreed that she would not get vaccinated until she felt ready: ‘Honestly, I wanted more study on it, I just wanted to feel at peace about it, I didn’t want to feel pressured, I didn’t want to feel forced. You know, everybody has their own theories and their own reasoning.’ Similarly, N2117 expressed concerns about how quickly the COVID-19 vaccine had been developed and chose to not be vaccinated, preferring to support her health in other ways: ‘A good vitamin regime, I walk daily… I eat healthy and I really try to take care of myself.’ When her granddaughter was born in October 2021, this participant recognized that her daughter-in-law, whom she described as a ‘germaphobe,’ wanted her to get vaccinated. Instead, the two women arrived at a compromise, and the participant self-isolated for several days and tested for COVID-19 prior to meeting her granddaughter. All in all, while some participants attributed their choice to get vaccinated to receiving information and encouragement from close relations or to feeling responsible for protecting the health of family members, many described a mix of perspectives and vaccination statuses within their networks. Women’s understandings of the socio-structural context influencing vaccine choices potentially contributed to the peaceful co-existence of these differing views. The majority of participants made vaccination decisions by synthesizing information from local and federal health agencies, media outlets, medical providers, and family and close relations and evaluating how it intersected with their personal circumstances (e.g., health conditions) and beliefs (e.g., faith). When discussing their own choices and those of their family and community members, many women situated these processes of vaccination decision-making in the larger context of socio-structural factors. For example, V2224 talked about living in a gentrifying neighborhood in which most of the COVID-19 prevention resources were used up by people who had recently moved to there: ‘So what happened was those gentrified residents came, they took advantage of the testing site and the vaccinations, but the people that had been here who really needed it, Black and Latino and Asians that needed it weren’t getting it.’ In her analysis, this resulted in long-term residents waiting to get vaccinated: My friends locally in my neighborhood just stopped caring, most of them did not get vaccinated until their yearly checkups or, you know, they didn’t go out of their way. So by the time they got vaccinated it was like the end of last year [2021], when things got really mild [and] calmed down. My friends locally in my neighborhood just stopped caring, most of them did not get vaccinated until their yearly checkups or, you know, they didn’t go out of their way. So by the time they got vaccinated it was like the end of last year [2021], when things got really mild [and] calmed down. V2005 also spoke to the importance of the availability of local resources. She explained that she went to her PCP for her first shot, but then received her second shot from a mobile clinic in her neighborhood. Her description of the mobile clinic underscored how having access to convenient and trustworthy healthcare made a difference when trying to get vaccinated: ‘That was when they come to the neighborhood. And they have their computers and the people that give you the shots, everything is all legitimate.’ Many participants discussed local, state, and federal governments as well as the pharmaceutical industry when talking about sources of COVID-19 information, the availability of prevention resources, and the widespread endorsement by public health officials to get vaccinated. However, participants did not describe these issues as motivating their vaccination decisions, but rather situated their choices within the context of contemporary and historic harms inflicted on Black people by governments and the medical establishment, the rise in visibility of White supremacy, and the potential motivations of a for-profit pharmaceutical industry when responding to a global pandemic. For example, V2224 explained the connection between the how the “old guard” of White male politicians responded to the pandemic and the disproportionate burden of infection borne by communities of color: I don’t think that they [White male politicians] infected the country. I think that they took the opportunity when they saw it to say, “You know what, let’s just see how this plays out.” Because they saw the communities it was affecting and who was getting the healthcare and who wasn’t getting the healthcare. And they let it play out exactly the way they saw fit and they said it was God’s will. But it wasn’t God’s will because there was medicine that could have helped these people. I don’t think that they [White male politicians] infected the country. I think that they took the opportunity when they saw it to say, “You know what, let’s just see how this plays out.” Because they saw the communities it was affecting and who was getting the healthcare and who wasn’t getting the healthcare. And they let it play out exactly the way they saw fit and they said it was God’s will. But it wasn’t God’s will because there was medicine that could have helped these people. Numerous participants saw these types of connections between political power and the mistreatment of Black people by the medical establishment as explaining why there were racial and ethnic disparities in COVID-19 morbidity and mortality rates. Among women who had chosen vaccination, these socio-structural factors also provided context for understanding why some people in their networks did not want to be vaccinated. V2164, who had not been concerned about getting vaccinated, provided a complex analysis linking the history of medical experimentation on Black people with modern-day media scare tactics: ‘I just feel like [when it comes to] Black people especially, they want [us] to be fearful because they have fooled us time and time again experimenting on us. … If you listen to the news you’ll never go and get a [vaccine] shot. And then they lie to you. Just outright liars. That’s why a lot of Black people don’t want to mess with it [the COVID-19 vaccine].’

This analysis draws upon 20 in-depth interviews conducted between March 15, 2022, and April 8, 2022 with women currently or previously on probation. Participants were part of a larger multisite cohort participating in studies on healthcare access, cervical cancer education and screening, and COVID-19 literacy among women involved with the criminal legal system funded by the National Institutes of Health (grants #R01MD010439 and #1U01MD017415). As eligibility criteria for the larger study, participants self-identified as women, were at least 18 years old with a current or past active probation status in Alameda County, CA, and were able to provide informed consent. Women were recruited via verbal invitation to participate by the Project Director. Prior to their participation in the study, the nature, purpose, and potential risks of the study were explained to women, and they were given the opportunity to ask questions before providing informed consent. Participants were assured of the confidentiality of their responses and were informed that they could withdraw from the study at any time without any consequences. The in-depth interviews varied in length between 18 minutes and 63 minutes, with an average length of 40 minutes. The interviews were conducted by trained interviewers (authors RA and LSG) via telephone and participants were compensated $40 for their time. A team of public health and communication specialists with experience working with women who are structurally marginalized developed the study’s interview guide. The interview questions explored beliefs about the pandemic, perspectives and practices around prevention guidelines such as masking and handwashing, sources of information about COVID-19 infection, testing, and vaccination, and access to and experiences of healthcare. The protocol was reviewed and approved by the Institutional Review Board at the University of Kansas Medical Center (FWA #00003411) under IRB approval number STUDY00142054 in accordance with the NIH single institutional review board policy for multisite research. Interviews were audio recorded and transcribed verbatim. For the analysis, we adopted a holistic approach that focused on keeping participants’ stories intact rather than fragmenting narratives into topical codes. We drew on Braun and Clarke’s (2006) notions of thematic analysis, creating a Word document containing deductive themes based on our overarching research questions around choices and experiences of COVID-19 testing and vaccination (e.g., accessibility, barriers, supports). Once the document of major deductive theme was established, each transcript was read by two qualitative analysts (authors MC and RA) who organized data under the themes, including illustrative quotes and analytic interpretations, and then added inductive themes that emerged from the transcripts (e.g., concerns about pre-existing conditions). The analysts met weekly for one hour; in each meeting, they discussed one or two transcripts and the related data and memos, noting commonalities and differences across participants. The analysts recorded additional thoughts, associations, and interpretations as they gained insights into the full dataset, returning to previously analyzed transcripts to develop a deeper understanding of key experiences (e.g., interacting with family members who made different vaccination choices). Once all transcripts had been read and discussed, the analysts presented key findings to the full authorship team to generate further interpretations of and reactions to the data.

Against the backdrop of a polarized and contentious national discourse about COVID-19 vaccination, there is much to learn from the complexity and compassion the participants in this study brought to this issue. This sample of predominantly Black women described making vaccination decisions by vetting resources, consulting with people in whom they had confidence, and situating learnings within the context of their own lives while also voicing a deep understanding and acceptance of people who arrived at different choices. Their narratives both negate over-simplified notions of trust as driving vaccination decisions and provide a roadmap for reconceptualizing trust as an outcome of intentional, sustained, and culturally relevant practices aimed at establishing transparency, accountability, and reciprocity. Of note, participants’ descriptions of how they identified and interacted with trusted resources align with Afrocentric approaches used to increase vaccine confidence in Canada ( Eissa et al., 2021 ) and in other health promotion efforts ( Davis et al., 2010 ). These approaches foreground socially constructed knowledge (in contrast to socially imposed knowledge) that emerges from the community, respectful dialogue, cultural relevancy, and the right to self-determination. Our empirical findings therefore support Wilson’s (2022) supposition that ‘a Black feminist bioethics may be precisely the foundational bioethical approach that is needed’ to meaningfully advance health and wellbeing in the aftermath of the COVID-19 pandemic and beyond.

This study analyzed 20 qualitative interviews with a sample of predominantly Black women living in an urban setting that provided robust public resources to reduce transmission and prevent serious illness due to COVID-19. Taking Wilson’s (2022) critique of the over-simplification of Black people’s health-related decision-making as our starting point, we sought to explore the factors that shape Black women’s choices about COVID-19 vaccination. Our findings show that although the overwhelming majority of participants were not employed and were living with disabling conditions or other chronic health issues, this sample of predominantly Black women invested considerable time and energy in investigating the COVID-19 vaccine and making carefully considered choices about whether or not to get vaccinated. Participants tended to triangulate COVID-19 information sources (news, government websites, public health websites such as WHO and CDC, healthcare providers, family members, friends) and interpret this material within the context of their personal experiences with the healthcare system, their chronic condition health status, and the individual providing the information. Regardless of their vaccination choice, participants were not complacent about their risk of being infected with COVID-19 and followed standard public health guidelines such as masking, handwashing, and social distancing. They perceived the broader process of the vaccine rollout as happening against the backdrop of key socio-structural issues, which may not have shaped their own vaccination decision, but gave them insight and understanding of why people in their networks made different choices. Wilson (2022 , p. S17) argues that ‘While trust has to be part of the discussion, it cannot become the discussion.’ Our findings support and expand upon this claim. Too often in the U.S. context, medical trust is conceived of as a unidirectional process that emphasizes individual responsibility for comprehending and unquestioningly following information delivered by authority figures, without holding those authorities accountable for creating welcoming environments, developing long-term relationships, reflecting on their own personal and systemic biases, or learning about their patients’ cultures when they differ from their own ( National Academies of Sciences, 2023 ). Our study provides empirical support for Wilson’s line of reasoning to decrease the emphasis on this narrow view of trust, as all the participants described much more complex processes than either blindly ‘trusting’ or categorically ‘distrusting’ medical authorities when making COVID-19 vaccination decisions. Indeed, whatever choice they made, study participants consistently reported engaging in critical thinking about whether to get vaccinated. Academic and media discussions of trust tend to present feeling alienated from and systemically harmed by the medical establishment as a unilateral factor that overrides other sources of information when Black people are making health-related decisions. There also is a tendency to conflate health literacy and trust, implying that people do not trust medical information because they misunderstand or do not understand it ( National Academies of Sciences, 2023 ). Findings from this study refute these discourses by documenting women’s active efforts to seek out multiple sources of information and evaluate each of them through a multi-dimensional lens that centered their own experiences but also included alternative perspectives and socio-structural context. Importantly, the strategies participants brought to this decision-making did not sideline trust, but rather invoked an expanded conceptualization of what trust is and how it can be developed by centering the unique experiences of Black women, being fundamentally bidirectional, and valuing family, faith, and other culturally relevant support structures ( Jacob et al., 2023 ). When participants spoke of giving particular weight to a trusted resource, they used this term to refer to relationships they had developed over time with specific individuals who had in fact demonstrated trustworthiness by giving credence to the participant’s self-knowledge, inviting their questions and perspectives, and acting with accountability and transparency (J. Hemberg et al., 2023). Findings from this study therefore also expand upon Wilson’s work and provide an alternative vision for making trust the discussion, by reframing its meaning for public health officials, the media, and other institutions. Participants in our study made it clear that trust was an active process that operated across all levels of the ecological model of health ( Bronfenbrenner, 1986 ): individual (having confidence in themselves to know their bodies and critically interpret multiple sources of information), interpersonal (evaluating how much weight someone’s advice carried based on previous interactions), community (analyzing and understanding why others placed trust in various information sources), and structural (assessing evidence of systemic racism). Finally, this study’s findings also point to a nuanced and often overlooked aspect of trust: the trust that making differing vaccine choices would not end relationships with family members and loved ones. In talking about the range of perspectives, thought processes, and decisions in their networks, participants often demonstrated an acceptance of and ability to co-exist with others’ views. Women who had chosen not to be vaccinated described this as a personal decision based on their understanding of and concerns about their own bodies, with some saying they would consider vaccination in the future. Vaccinated participants frequently noted that they understood how socio-structural factors could lead to people being fearful of the vaccine or the medical providers administering it, having trouble accessing vaccine clinics, or not being able to prioritize getting vaccinated as they navigated the challenges of their daily lives. Overall, both vaccinated and unvaccinated women did not expect that others around them would automatically make the same choice as they had, nor that making different choices would lead to irreconcilable conflict. Rather than seeing vaccination as an imperative, they saw it as a complex choice – and indicated that they trusted their loved ones to make the best choice for themselves. This finding highlights a key strength of vaccine information campaigns led or co-led by Black organizations, many of which emphasized the familial and community-level impacts of COVID-19 prevention strategies and encouraged questions, dialogue, and respect for the validity of people’s vaccination concerns. Examples of these campaigns include the #BetweenUsAboutUs ( The Conversation La Conversacion #BetweenUsAboutUs ) video series featuring healthcare workers of color that was disseminated through social media and viewed more than 220 million times; the ‘R U Taking the Vaccine?’ webinar hosted by the University of California Black Staff & Faculty Organization (2021) and local efforts led by Roots Community Health, which at the time of this writing continues to promote COVID-19 prevention through social media, free distribution of COVID-19 home tests, health fairs, and health care provision as part of its approach to ‘healing our community from within.’

Structural racism and other forms of oppression have driven substantial racial and ethnic disparities in rates of COVID-19 infections, hospitalizations, and deaths (Magesh, 2021; Mude, 2021; Centers for Disease Control and Prevention, 2022 ). Factors contributing to such disparities include poverty, neighborhood resource deprivation, and barriers to accessing healthcare. Black, Latinx, and Native people in the United States have a higher likelihood of exposure to COVID-19 infection than White people because they are more likely to live in crowded conditions and multigenerational households and work in occupations that cannot be performed remotely ( Lopez et al.,2021 ). In addition to the increased risk of COVID-19 infection, the higher prevalence of chronic conditions among racially minoritized people compared to White peers puts them at greater risk for hospitalization and death once infected with the virus ( Acosta et al., 2021 ; Ko et al., 2021 ; Rubin-Miller et al., 2020 ). In the U.S., Black people experience substantially poorer COVID-19 outcomes compared to White people ( Poulson et al., 2021 ). This disproportionate burden is inextricably connected to entrenched social, economic, and political racism and disadvantage. Laster Pirtle (2020) , drawing on Robinson’s concept of ‘racial capitalism’ (1983), posits that racism and capitalism mutually construct harmful social conditions such as residential segregation, lack of housing, medical bias, and barriers to resources, all of which fuel disparities in the rates of COVID-19 infections, hospitalizations, and deaths. Kajeepeta et al. (2022) document one example of how systems interact to exacerbate COVID-19 risk in their study of New York City’s decision to task police with enforcing social distancing and wearing masks in public spaces, which reinscribed racialized discrimination and likely exacerbated the disproportionate spread of infection in Black communities. As Abdul El-Sayed, the former director of the Detroit Health Department, observes: ‘When you look at communities that are suffering the most, they are communities on which environmental injustice, structural racism, and their implications on poverty, have already softened the space for the incoming of this virus to devastate people’ ( El-Sayed, 2020 ). The COVID-19 vaccine and subsequent boosters have been strongly recommended as safe and effective tools for preventing serious illness leading to hospitalization and death, with robust scientific evidence to back these claims (Chen, 2021; Chirico, 2022; Harder, 2021; Liu, 2021; Pormohammad, 2021; Tenforde, 2021). Given racial disparities in COVID-19 outcomes, many conversations in the academic literature as well as mainstream media about vaccination have centered on uptake among racially minoritized individuals. In the U.S. context, Black people have been the subject of much of this focus. Systematic reviews have cited Black race and female identification as being associated with a lower likelihood to choose to be vaccinated (AlShurman, 2021; Callaghan, 2021; Fisher, 2020; Kreps, 2020; Olagoke, 2021; Reiter, 2020). Studies have cited the prevalence of COVID-19 ‘vaccine hesitancy,’ defined by the World Health Organization (WHO) (2014) as the ‘delay in acceptance or refusal of vaccines despite availability of vaccination services,’ to be highest among Black individuals relative to other racial groups ( Kricorian, 2021 ; Nguyen, 2021). The WHO notes that vaccine hesitancy is ‘complex and context-specific’ and influenced by confidence in vaccine safety and effectiveness, complacency about disease risks, and the convenience of vaccination services (2014). An emergent body of literature focuses on the connection between lack of confidence in the COVID-19 vaccine and a deep-seated mistrust of healthcare systems, the pharmaceutical industry, and government institutions ( Willis et al., 2021 ; Yasmin, 2021). According to the National Academies of Sciences, Engineering, and Medicine, trust in medical settings has been identified as key for patients’ engagement in care and willingness to follow clinical advice, with an emphasis on the need for providers to communicate clearly, accept a patient’s ‘full self,’ and demonstrate bidirectional trust by honoring patients’ self-knowledge and understanding of their own bodies (2023). Studies often cite high levels of medical mistrust among Black people in the U.S. as arising from centuries of well-documented examples of racist exploitation by American physicians and researchers ( Warren et al., 2020 ) as well as current day systemic racism including police brutality, mass incarceration, poverty, and racial residential segregation (Bogart, 2021; Jacob et al., 2023 ). As Jaiswal and Halkitis (2019, p. 79) note, medical mistrust is ‘a phenomenon created by and existing within a system that creates, sustains, and reinforces’ multiple forms of inequity. A structural understanding of mistrust has led to the idea of increasing the trustworthiness of systems to convert vaccine ‘hesitance’ to vaccine acceptance (Best, 2021; Hemberg, 2023). In ‘Is Trust Enough? Anti-Black Racism and the Perception of Black Vaccine Hesitancy,’ Yolonda Wilson (2022) decenters this intense focus on mistrust, noting that the question ‘Why don’t Black people trust vaccines?’ inherently pathologizes Black people. Wilson underscores the ways that following the ‘trust’ line of reasoning places blame upon individual Black people instead of examining the conditions of the unjust society in which they exist, and the responsibility institutions have for those conditions. Furthermore, Wilson notes, ‘the mere fact of asking questions, asking for evidence, asking for confirmation isn’t ‘hesitancy’… In most other contexts, doing one’s homework, so to speak, is a matter of due diligence and is not only encouraged but also expected from reasonable adults’ (2022, p. S16). As such, Wilson argues, questioning Black people’s trust in the COVID-19 vaccine ‘reflects a moral failure to recognize the full humanity of Black people… [and to] understand Black people as rational, complex beings who are fit to make reasonable decisions guided by complex factors’ (2022, p. S13, p. S13). In this paper, we build on Wilson’s argument for the need to explore the complexities of Black people’s medical decisions beyond the lens of ‘trust’ by asking a different question: what shapes Black women’s choices to get or not get vaccinated against COVID-19? We explore this question by drawing on data from qualitative interviews with a sample of predominantly Black women in Alameda County, CA recruited from an ongoing community-based longitudinal study. In our analysis, we aim to build a broader understanding of how women receive information about COVID-19 and the vaccine and how living with chronic health conditions and family relationships influence their vaccination choices. We also examine how women’s perspectives on broader structural factors are meaningful in health-related decision-making.