Table 2.

Participant quotes related to the themes

Theme: I get screened

Patient-related subthemes: I have the knowledge to take care of myself    • If I do what I can, and I cope… I know I have to do it. So I do it. And that’s all I can do is try to prevent it and get tested early.”    • “I would rather know – the sooner you are diagnosed the better you will do”    • “because even you can have breast cancer and be treated and continue to live a happy and healthy life. So, because you are diagnosed with cancer, that doesn’t mean that you’re going to automatically die just like any other medical condition that you may have. Yeah, you can die from diabetes, you could die from a heart attack, but still you’re going to treat the condition. So, whatever you’re diagnosed with, you’re going to treat … this you’re unable to treat any longer.”

My spirituality gives me strength    • “we have to know how to turn that fear over to God. And I hope I don’t offend anybody by saying this but I’m a spiritual being. And we have to know how to relinquish that fear to God because … the Lord does not give us the spirit of fear, but he gives the spirit of peace, love and a sound mind and having a sound mind should push you to check yourself. We can’t let fear control us. And that’s what fear will do. It will control you to the point where you you lose sight of everything.”    • “So I would say, use nutrition, use prayer. But God also works through the doctors. And he works through the medicine and ask him to direct you the way you should go. And then have faith. So it’s a combination, not just faith alone.”

I have a family history so I must take extra care    • “I have I have had several mammograms, I think basically started when I was in my either 40s or 50s. And I continue to have them on a yearly basis. And I think it’s very important that we do this, especially if you have cancer run in your family on both sides of the family. So it’s very important that I continue to have on even at my age right now, you know, I still have them.”    • “I have had a mammogram. I got a mammogram because it’s a recommended and for me required screening. And because my sister is a breast cancer survivor.”

System-related subthemes:

I was able to find access to compassionate care    • “You know what, you know, I’ve had I have heard that, you know, they just push you up there and put you up there, you know, they have no compassion for mine. I’m blessed to say my radiologists are good.”    • “I also had a technician that actually warmed it up because I had to do a sonogram so that I know how you feel when so you appreciate the fact that they think about those small things.”    • “They even have warm hands because some of them have cold hands. You know, so they warm their hands up. Thank goodness

Theme: I do not get screened

Patient-related subthemes:

Socioeconomics (no insurance, no money, no transportation, no time off from work, no primary care provider)    • “And now the problem that I’m having now is I felt that it was too expensive.”    • “…a fear of having no family support, they have young children, or they’re single mothers, or they’re just worried that they might have to stop from work, and they don’t have enough financial support. And they’re not gonna be able to pay the rent or the mortgage. And they just feel like they want to continue to work or to whenever but they don’t want to know.”    • “The funds to get it done. You know, then it they’ll try to get it done. They don’t have the money so they put it off. No health insurance.”    • “Um, well, I think one of the things that would keep women from getting a mammogram is a lack of insurance or thought that they need insurance to have one.”    • “I had a mammogram but it’s been two years since I had a mammogram. And the reason being is I had to be referred out from my primary care doctor. And every time I when I go once a year for my physical and we always say he’s gonna make the referral for me to get a mammogram, but he never did.”

Fear of the pain    • “I am a big breasted person. And it’s very uncomfortable when you have to get it done. Just a procedure alone, just thinking about it.”    • “it does hurt. It does hurt. And it’s archaic. I don’t understand why they can’t have a non invasive one. And we have the technology for it.”    • “It’s just hearing. Those of us who have done it before, come and talk about the negative part of the mammogram like the the hurt or the pinch, and saying that they don’t have a medium size breast, it’s more painful. Things like that. That’s what I am hearing.”

Fear of burdening your family    • “What do you think about telling me a family is something that they would be afraid of? That you have breast cancer? That’s the number one fear.”    • “My sister in law died from cancer, and she had it three times before. And on this fourth time, it was different. But she didn’t she refuse to face it. And her bills weren’t being paid. Her children suspected but didn’t know. So we started going to the hospital and to their appointments with her. And she started to let us in a little bit more and more, we ended up having to raise money for her. Because it got so bad that she was behind on everything. So for some people, they would rather not know. Because they know in their heart of hearts, that something is wrong.”

Fear of hearing the diagnosis    • “Me personally, I can’t really say why Black women don’t go in, get it done. When I am going to say is fear could be a major, you know, part of why they don’t get it done.”    • “One of the reasons I have found over the years and talking to people and family members is fear. They have a fear of not wanting to know and, or they will either say, you know, I’m fine. There’s nothing wrong with me. And to me, that’s a form of denial. old saying was back in the day, what you don’t know will hurt won’t hurt you. But that’s not true. What you don’t know will kill you.”

Fear of dying    • “Well, it basically ends in death. Most women don’t know the extremes or anything about it. So just to know them, I have breast cancer, you know, they die. So it’s better off not knowing don’t want to know. Don’t care to know. that. nothing they can do is like maybe I don’t know the theory. But once they cut you open, you get this shortly after that.”    • “Do they know what cancer is? There’s no cure for it. It’s coming in every shape form. all over your body. I mean, evidently they don’t know what it is and they can’t cure it is just killer.”    • “Have you heard of any treatment for cancer? radiation and chemotherapy and whatever. But does it work? Bottom line just doesn’t work? I mean, there are some people that just don’t want to know, unfortunately.”    • “I had another friend, something was coming out of her breast. And I asked her when she told me about it. I thought it was just like it had just happened. For three years this was happening. And she refused to go and get checked. So I asked her why didn’t you want to get check. She said, I know I have some things. She said if I’m going to die, I just want to die. I don’t want to know that I’m going to die. And that is a real fear.”

Distrust of physicians    • “Oh, my grandma said, man, no, doctors don’t know more than you. So it goes back to generations and traditions and just listening.”    • “there’s a distrust of doctors and what they say, because of how they have treated us in the past. And they don’t want to deal with that. They don’t want to deal with the lack of empathy. They don’t want to deal with the fact that some of these doctors, they’re so they’re so beyond disrespectful. And they don’t ever listen to what you’re trying to say unless you force them to listen. It’s sometimes it’s like the struggle that they don’t need to handle.”    • “That’s kind of you know, and yeah, I think to some extent, some, some of the medical professionals, they believe that they I that they, you know, they can give everybody a diagnosis.”

Skepticism of mammography    • “Radiation and, you know, all kinds of thoughts because I already had thyroid cancer. I’m like, I don’t need radiation every year. So I figure every three years would be good.”    • “…sometimes people think that when you go there and they say, what is it radiation that you will get a lump after you actually go and get the test? That you know, it’s poison that they’re shooting into, or I don’t know the whole process

Fatalism: I will take this to my grave    • “She was like, Nah, I don’t want them touching me. I don’t know if something wrong with me. I just want this take it to the grave with me.”    • “And for other people, they would rather not know, just in case something is wrong.”    • “Sometimes people just live fearfully, okay, they, they rather live in fear than to face the facts and to live up to the facts.”    • “It is. It is in God’s hands. So why even go get tested? Why would you want to? Like, honestly, why would you want to go get a mammogram? Or COVID test? Okay, cuz it’s in God’s hands.”

If I have no symptoms and no family history so I don’t need to be screened.    • “You can’t always live in that segment of I’m okay. You know, nobody in my family has it. I’m okay.”    • “But I also know some of them just don’t have the reason to go see you know what’s going on because there’s no pain, no discharge no lumps no discoloration no reason.”    • “Yes, I do have cousins and close friends that have had breast cancer. And it seems like it’s definitely in the lineage because several people within those families, so I imagine which is not my case, that if somebody close to me, Mom, aunt or somebody had breast cancer, it would change my attitude.”    • “I do agree that if you have a family history of breast cancer, that would make you want to start getting mammograms even at an earlier age, the earliest age that they’re available to you.”

I have too many family pressures, so my health is not my priority.    • “… you know your family. And like she said, You’re the one that’s always running and taking care of them.”    • Considering what was just mentioned in the last conversation that for some women, breast cancer is not a priority. And then for a lot of us we take care of so many other people that our overall health (is not a priority)”    • “Yeah, it’s just that I never thought about getting it done. I got so much other stuff going on with me. Whereas though, getting a mammogram isn’t like one of my major priorities. I’m being on it.”    • “When I speak to women, to black women, health is not a priority, that women are working really hard just to be alive, stay alive, keep alive, and take care of everybody else. So health generally, is not high up on the list. And so the fear of what will happen to other people, if I’m not here, not the fear of what’s going to happen to me, the fear of what will happen to other people, if I’m not here, to take care of X, Y, and Z.”

System-related subthemes:

Having to deal with biased or inconsiderate staff.    • “And the fact that when women No, I think when Black women go to the doctor they’re not given the kind of attention that our white counterparts see.”    • “When you’re dealing with women’s issues, many of our things are our problems or situations get put on the backburner. And I’m glad of this forum because we need to put Black women’s issues on the forefront. I think the fact that we are the ones it was Black women that won that election with Joe Biden Black women, it would have been a no go and I think that people for the first time in a long time are starting to look at us as other than animals, other than problematic, and I think it’s our time.”    • “Sometimes the people that are giving it aren’t as compassionate. I mean, they’re so used to doing it. They feel like we should just, you know, roll with the punches and do it and keep it moving.”    • “And then you have the disrespect of your own kind. Because we like to treat each other that as African American, we treat each other very bad. We don’t have no love for each other. And when you walk into one of these centers, just the way they handle you or talk to you is enough to say I don’t need to do this. But if you have a chance or the opportunity to go to other facilities out to Central Brooklyn, it’s a total different experience, especially if you’re not dealing with your own kind. And I’ve experienced that a lot. And to be honest, I don’t do a lot of my health care in central Brooklyn.”

Theme: We need to get the word out

Subtheme But we just don’t talk about it

• “But those are the detriments to women having mammograms and fear because there’s no there’s no information about it. And it’s not something that in our community we talk about.”    • “Conversation is going to be one of the most difficult because they don’t know anybody. So it’s not real to them. It’s like, stuff being on TV. It’s not real.”    • “Some people have knowledge that whether they are scientific or not, they can be from a family history of how the family thinks and feels and what it used to happen, I have not happened. And therefore, you know, people just make one of those excuses and don’t take advantage of opportunities that are given them.”    • “Ladies, ladies, you know, we got to take care of ourselves, we know what’s going on. You know, we got to do Ladies, ladies, come on, we got to get ourselves together. You know, we got to do this Black girl magic, we need to take care of us. We don’t take care of us what’s gonna happen to them? And how they gonna function without us.”    • “For this to be for it to become really what I keep calling a movement, and not just a month and not just a mammogram, but a movement around breast health and women’s health. And and for me the piece is also that women not feel that they have been that they are responsible for their own lack of or, or, you know that they are made to feel as if they are the criminals, right.”    • “So what we have to do is all of these pieces that we are naming, whether you agree with the heart of it or not all of them, it’s going to take all the pieces to help women be empowered to see themselves as priority and their health as priority.”

We need to get educated    • “If I had the job, or the responsibility of getting a message out there to the women, I would have to school myself more on the process and on the problem. And I would have to really do some research and, you know, read up on why different types of cancer and why it is important for the African American women to be screened. Because, again, we we have families, children and husbands and mothers and, and, and fathers and grandparents that we don’t want to just leave here, just leave just like, you know, it doesn’t take you like that. But we, I think we should be at the point where we think more of our families, then we actually think of ourselves in if you put your family put God first in your family. Second, you would want to educate yourself on the progress of cancer or the different types of cancer or you would want to school yourself, educate yourself on what is going on.”

Know your community and get the word out    • “Every outlet that I can from social media, to coming through the block with a bullhorn free mammogram, make sure you put that word free mammogram, you know that get your insurance, you know, whatever you can someone else to suck up the cost, you know, because we don’t like to pay for a lot of things that we all know that’s true. You know, so free mammogram testing right here and then if you can get another truck next to it, let me see we can check you out with the high blood pressure you know how people sit down and get the high blood pressure test it see if you are a diabetic it’s a little like a mobile clinic.”    • “I would ask the same questions like were asking here. What are your fears? What is your Why are you standoffish about it? You know, what would what do we need to do to show you how important it is to come and be screened and talk about it? So? I don’t know. I think I would, you know, ask them questions like, what’s your biggest fear? Why wouldn’t you come out and try to persuade them that way?”    • “Of course, everybody goes goals and get the nails or hair done. So you beat the streets, you sometimes you have to beat the streets, even though what the COVID going on.”    • “So, if I was in charge of trying to spread the word to Black women about screening, I would probably try to do community meetings at different community centers, pass out flyers, you know, even sometimes door to door Not that I might be safe anymore. But you know, if you like the mailman, you stick fliers in the door for women, or any family members to come out. That’s I would try to like get the community together and do community gatherings to talk about it and the importance of being screened for it.”    • “You can do like the flyers and doctor’s offices, you can leave flyers there, because a lot of Black people do Black women to go to different doctors, you know how to leave the flowers on top of the counter, you know, corner stores, you know, word of mouth, organizations, different organizations, if you can find like an organization that you belong to, you can do a community fundraiser there, and just talk about the reasons why it’s important to get it done, especially for Black women at the age of 40.”    • “I used to be a housing manager. And it was hard trying to get internet for some of the residents. So they will come to a community center. But right now with the pandemic threat, community centers is closed so they don’t have access to get the internet.”

Use the church to bring people education    • But not only that, like you said I’d hit him in the right place. Everybody goes to a church meeting    • That’s when like you said you got to know your people know when they hit him. Some come out on Saturdays, the meeting and whatnot. That’s when we get them have trucks and stuff like that.    • “We use the faith based groups, and we use the offices of the different… politicians who are in prayer we was there, and members of the organized groups, we get some people to go and hand out flyers.”    • “My church was actually virtually ready from the beginning. So what happens is, we’re accessible virtually, like six days a week. And then on Sunday, we have announcements. So the last event that I did, which was in breast cancer, we made it but it was still health outreach, is that I set up a event on the virtual screen, telling you where you could get the health care how you could get it who was providing it. And that seems to work because we reach out to a large community.”