In interviews, we identified mentions of racism experienced within everyday life (including historical trauma), and experiences of racism specifically within the healthcare setting. Individuals reported that both types of experience impacted their desire and ability to engage with healthcare, including through medical mistrust and healthcare avoidance. One participant talked directly about their perception of healthcare providers in their community, and their belief that internalized bias may impact quality of care; “I know the doctors know the health disparities. I know the doctors know how they treat all their patients. So if they have patients that don’t look like them and they don’t treat those patients like they treat their other patients, then that’s something that they need to work on themselves because they took an oath when they said that they were going to do this work, they meant for everybody.”

Participants reported a lack of recognition or addressing of historical trauma within healthcare in their community; described how they felt systemic racism was embedded in the healthcare system; and perceived that implicit biases impact the way non-racially concordant physicians provided care. Some individuals described stereotypes of Black patients that they had encountered in their healthcare experiences, such as not being offered pain management when clearly in pain during a medical procedure. Individuals also described racism “blanketed under kindness:” showing up as microaggressions, or physicians’ lack of knowledge about how to treat patients that do not look like them, perhaps due to lack of experience. One interviewee described the following experience while having a biopsy: “I had found a kind of lesion on my shoulder and… he had to take a biopsy, but he made the comment ‘I’m not sure how it will heal on Black skin compared to the White skin.’ And so he kind of talked about how that lesion may possibly look or scar. So that’s kind of why I was thinking, ‘oh, he hasn’t had much experience with Black individuals.’” Experiences of everyday racism or racism in healthcare were described by almost all of our study participants, perhaps indicating its importance in shaping engagement with the medical system among this community.

Medical mistrust can be defined as an absence of trust that health care providers and/or healthcare organizations genuinely care for patients’ interests, are honest, practice confidentiality, and have the competence to produce the best health outcomes.[20] It is a response to systems and experiences of oppression.[21] We specifically asked our study participants whether they trusted the medical system, as well as their reasoning for their trust (or lack thereof). Many interviewees reported that while they might trust individual providers, they did not trust the medical system, including healthcare institutions and health insurers: “I trust individuals. I don’t trust the institution.” In part, this was because healthcare is not independent of the society within which it exists, and therefore seen as containing the same structural and systemic biases: “So, my trust of medical of healthcare is the same as society. It’s not independent. It’s not like if racism and sexism and bias and all of these things exist in society, it permeates healthcare as well in the same way.” Some specifically referred to historic medical research abuses (e.g., the Tuskeegee Syphilis Study) as shaping their perspectives, and specifically impacting their desire to participate in cancer clinical trials: “No, I do not [trust the medical system]. Historically they have proven through time and time again, that people such as myself are tools of experimentation, and that having not only taught to me, but I’ve done research myself of how people of color have always been physically instruments to poke and prod. And so I would find foolish to trust entirely the motives of the medical community.” Very few of our participants expressed a willingness to participate in clinical trials: “I can’t not think of how that has gone poorly for people before me, even with medical advancements, people of color have still been on the short end of the stick when it comes to healthcare and medical care. So I could not in good faith believe that being a part of medical trial would be to my benefit.” However, some said that they might change their mind if they were put in the situation of being directly asked to participate in a clinical trial: “I don’t think I would want to be in one those clinical trials. I mean, I do want to see research grow further and study and stuff, but at the same time, I don’t know. But you never know. I can’t say until I’m in that position. You know what I’m saying? Your mind could change quick.”

Individuals also expressed that their community has very specific mistrust of the providers in their home community of Waterloo, causing many to seek care outside the community (see theme: Ability to Choose). This may be driven by the tight-knit nature of the community, and the sharing of information such that if one person has a bad experience, they will share that experience with others.

Individuals in our study reported very few instances of racial concordance with healthcare providers. When participants did report seeing a racially concordant provider, they felt heard, they were able to better communicate, and were more trusting. One participant described their experience with a racially concordant provider in the local community: “Not only did they listen to me, they were more attuned with what was going on with me than I would even be aware of. I could go to them with concerns and they may say historically this is something we experienced, and I would be able to identify what they’re talking about… So there was kind of a familiarity that I had with them that I wasn’t able to identify with other physicians.” Individuals expressed that non-concordant providers did not share their same experiences and understanding towards the medical system: “I was taken back at how many physicians in the room were not aware of the Tuskegee airmen experiment.” This lack of shared experience and understanding affected individuals’ trust in their providers, and may have limited communication between patients and providers.

Participants who did have trust in their provider or healthcare system often stated they had a long-term relationship with their doctor; that they felt like their provider cared about them and took the time to learn deeply about their medical issues. In general, those who reported good communication with providers also reported that they received high quality medical care. One participant described discordance between the communication they wanted from their physician, versus their experience: “There was not a conversation about the illness. There was no real explanation of what was going on. The only way I can explain it is when you go to a restaurant and the waitress takes your order and gives your food. Yep, that was okay that she gave your food. But then you go to another restaurant and she has a conversation, how are you doing? It’s a nice day. That experience is totally different than the other experience. And that’s kind of how I would look at those is it was very… I don’t know, just generic and mechanical.”

Some participants expressed that they had experienced a lack of depth of communication, with unclear or inadequate explanations for tests ordered or medical options presented. Participants reported that physician lack of communication around medical decision-making may lead to lack of patient understanding and frustration. This frustration was described by one participant, who felt their physician had not well communicated why they did not recommend the participant (their patient) for a cancer screening test: “And I feel like why do we have to fight with you guys? I understand there’s age guidelines. I understand there’s things, but you know that things are changing. People are catching things at a younger rate. People are dying younger. Run the test. If the signs and symptoms are there, run the test. What harm is it going to do? Come back negative? But that’s not what’s been happening, has it?” Further, it was evident that trust and action are two separate concepts: one can trust one’s provider, but this trust has to be verified in the actions the provider takes (i.e., following up on the things one says one will do for the patient).

Almost all interviewees discussed cultural norms in which they only seek medical care as a last resort and if critically necessary. For a variety of reasons including mistrust, historical violence toward Black people within the medical system, and prior negative experience, participants talked about preferring to turn to their own community for health-related needs rather than the medical system. One participant described: “But as history has it, most people don’t want to go to the doctor. Why is that? It’s just from years ago, I suppose, just something that they try to self-diagnose self and take care of self, which always don’t come out or then it gets too bad and too late and then they go to the doctor.” We heard that this lack of trust may be related to racism, both within and towards the community: “…[M]y parents’ generation, there’s a mid-generation where they don’t trust Black doctors, even Black people because racism is so indoctrinated that the images that White people get that make them think that Black people are less than. Black people have been fed those same images, too, so there’s many Black people that feel a Black doctor wouldn’t be as good as a White doctor themselves.” In addition, lack of comfort with engaging with the medical system may have roots in childhood access and insurance: “But then I look at my husband and there has to be damn near bone poking out of his body before he goes to a doctor because he didn’t come up in an environment that had insurance all the time.”

Because of the stigma associated with cancer itself, many participants noted that cancer wasn’t something that was talked about in the community: “It’s something that’s not taught in our community. I don’t really hear about it as much, unless it’s a family member who may have cancer, who had cancer, but it’s just never brought up to me.” Interviewees reported that, in part, stigma may occur because there was a perception in the community that once they heard of a friend or family member being diagnosed with cancer, this was often followed by news of that individual’s death. Thus, many in the community hold a (mis)perception that a cancer diagnosis is always fatal. However, there were indications this lack of desire to talk about cancer may be generational, with the older generations less likely to discuss their diagnoses than those who are younger. One participant described this phenomenon: “Because of the education. I mean, growing up, man, everybody who had admitted they had cancer, they ended up dying. Usually, when a person died, you wouldn’t even know they had cancer until they was dead… Probably up until about 10 years ago, you hardly ever heard men saying or somebody, ‘Hey, I got prostate cancer.’ Black men just wouldn’t say that’s what it was. Now, I’ve had a number of my friends that say, ‘Hey, man, I got prostate cancer. I’m glad I got it caught early. I got screened early. I’ll be fine.’”

Further, individuals expressed their community may hold attitudes of fatalism in who does or does not develop cancer, which may contribute to individuals’ desire (or lack thereof) to the stigma surrounding cancer. One participant noted: “I think that Black people have a general, ‘Oh, you don’t know what’s going to happen because some people get it, some people don’t.’ It seems like crap shoot more than a preventable situation.” Another participant described this as a lack of agency in the context of community attitudes towards cancer screening: “Are you going to vote? No. Why? What different does it make? They going to do what they want to do?” Well, that’s the way they feel about screening for cancer. “What different do it make? If I got it, I got it.” It was noted that educating community members could be one way to address fatalism regarding cancer, and to support community members in both talking about cancer, and engaging in cancer prevention and control behaviors.

Many participants, especially those who were younger, expressed a desire to talk about cancer within their community. Yet, despite this desire, individuals reported that they did not always feel like they were equipped with the knowledge to have such conversations. Thus, they identified a need for community education around cancer, citing that education may address both lack of knowledge, and cultural stigma surrounding cancer. Every individual interviewed shared that there was a lack of knowledge around cancer, either their own, within their circle of family and friends, or in the broader community. Individuals reported a lack of knowledge about the causes of cancer; where or when to get cancer screening; knowing how and when to self-check; and, the purpose and benefit of clinical trials in cancer treatment. Information did not necessarily have to be provided by healthcare or providers; indeed, several participants noted faith-based organizations as trusted partners in information sharing in the community. Participants also noted a general need for information on how to engage with their healthcare providers, including what questions to ask their provider about cancer and cancer prevention activities (e.g., screening).

This theme encompassed several independent but interrelated concepts. First, participants noted the importance of health insurance in determining what healthcare providers one can see, and what healthcare (prevention, treatments, etc.) one is able to access. The lack of insurance and/or ability to choose on low-cost plans may impact healthcare participation even when an individual has insurance; individuals without a history of insurance may be hesitant to engage even after acquiring the coverage to do so. Insurance-related ability to choose was strongly related to poverty and socio-economic status. One participant noted: “It’s very limited. With Title 19, I feel like we don’t have too many options. Me myself, you really don’t get no background, none of that. You just select someone, and that’s just what I did. I just basically, okay, whoever you got open.” Some also lamented the lack of choice, specifically regarding the ability to get low-cost or free screenings in-community, particularly for those of low income.

Ability to choose also encompassed seeking care outside of the community when desired. While most participants reported seeking routine or primary care within their home community, almost all individuals who had more serious medical issues (including cancer, and other chronic disease management) reported that they chose to seek care for those issues outside of the community. Two facilities, both located <2 hours from Black Hawk County, were identified as places that people looked to for complex medical care: “So when dealing with cancer, we’ve seen too many people of color die here in Iowa by sticking to [named local hospital]. And so it has become a consensus with the people I know and the people in my close-knit community that when it comes to our life and cancer, we are not going to leave it in the hands of [local] doctors. We are going to go to [named facility outside the community] if we can, if our insurances will allow.” This ability to choose was closely linked with medical mistrust; and with specific mistrust of Black Hawk County and/or Iowa providers. As another person phrased it: “No, you need to stop dealing with local, go to [named facility outside of the community],” because the reason why I said [aforementioned facility], they have a lot more resources, they have a lot more experience in dealing with a variety of things.” Participants shared that their community understood that the resources, and the best doctors, were more likely to be found outside of their local community.

Multiple participants reported the need to self-advocate during receipt of medical care (not necessarily directed specifically at cancer care); this involves self-trust and self-awareness: “[that] is when I start to be more aware of my health. I figured out that I needed to be my best advocate at that time, and I was not going to let somebody tell me how I was feeling or was not feeling”. In some cases, participants reported feeling like they had to work hard to get the care they felt that they should have received initially. Sometimes, participants reported the need to be firm in the face of resistance from their healthcare provider: “My [relative] has a brain aneurysm, and she had to fight with them to get a referral to [facility outside the community].”

Participants also identified the need to self-educate: “Immediately I just look for information. The man gave me a procedure. I came home and got on my computer. “Now, what did he just do to me and why?”. Education was identified as a way of creating confidence to engage in decision-making with one’s provider: “But I feel I know what to ask a doctor and I know how to talk to a doctor to get what I need.” Individuals also identified that being educated on a topic, and bringing questions to medical appointments may have affected the quality of care received: “I think the ones with my sister were very good. And I think the reason why they were is because of the questions I asked them. They didn’t know where I got my questions from, but they knew my questions were knowledgeable questions. They knew that there was somewhere somehow that I would not have asked those questions if somebody hadn’t been talking to me.” Having personal experience in healthcare was noted to support the ability to advocate for self and others, and some individuals identified that sharing knowledge as a responsibility of those with the education: “We need to be better advocates for ourselves. And by doing that, really pulling out the Black medical voice and calling on the Black medical community to see that as a charge and a responsibility for them…”

Our interviews indicated that the ability to self-advocate and support one another in pursuit of high-quality, culturally-competent healthcare was a strength of this community. Having friends or family with experience or knowledge (including connections working in healthcare, or experiences with cancer) was reported to support and navigating the healthcare system. One individual reported how having a friend who was a doctor was invaluable in helping her self-advocate to get the right care “it was my friend who’s a doctor who told me, she was like, “Yeah. No, you cannot be stuffing yourself full of antibiotics.” She was like, “No, don’t take that.” She was like, “Find you an OB-GYN and get in.” And my friend is Black, and she’s a doctor in the city.” Support systems also provide logistical support, including transportation to appointments, and caregiving. Further, individuals noted the importance of having a system to support difficult journeys; several individuals mentioned support groups that had been founded within the community to support those going through similar experiences.

Having a social structure in place also was noted to reinforce healthy behaviors: “being around healthy people, all my friends are healthy,” as well as support conversations around health: “And my golfing buddies, we all talk about health. That’s pretty important to us.” Several individuals noted this specifically in the context of cancer screening: “I do know I have to believe that people in my community want to get screened. I partially believe people in my community want me or you to say “[Name redacted], did you do your monthly self-breast exam? Did you go get your mammogram? Did you go have your annual Pap or what?”” While individuals recognized the importance of social support to their own health journeys, they also reported the desire to do the same for others “Just like the importance of maybe doing the footwork like you would do for an election, you may have to do the footwork for healthcare the same way… Getting out there and saying, “Hey, what can we do to help? Do you need rides? Do you need help getting things set up for you to go to the doctor? Do you even have healthcare? Is there someone that you have that can help you in these things?”” Individuals that we interviewed expressed that the tight-knit nature of the community, and the desire to help one another were key factors supporting the resiliency of the community.