“I’m Fighting for My Life”: Exploring Interactions Between Black Women with Breast Cancer and Healthcare Providers

Abstract

Black Americans face a multitude of problems in the healthcare system, including challenges during interactions with healthcare providers. The present study examined the quality of healthcare provider–Black patient interactions in a sample of Black American women with a breast cancer diagnosis. More specifically, the study examined potential contributors to Black Americans’ current healthcare experiences and lack of trust by identifying their specific negative and positive encounters in the healthcare system. Three in-person Gatherings (i.e., culturally curated focus groups; N = 37) were conducted as part of a community–academic research partnership, Project SOAR (Speaking Our African American Realities). Four themes were identified through reflexive thematic analysis: Individual and Systemic Injustice Directed at Black Breast Cancer Survivors; Protecting Myself from an Untrustworthy Medical System; Stereotypes Interfered with My Care; and Good Care Should Include Compassion, Respect, Shared Decision Making, and Tailored Support. The present findings highlight the importance of addressing systemic and individual injustice toward Black Americans in healthcare settings generally, and Black women diagnosed with breast cancer specifically.

Introduction

In the U.S., more than 250,000 women are diagnosed with breast cancer each year (Centers for Disease Control and Prevention, 2021), and more than 3.8 million women are living with a breast cancer diagnosis (American Cancer Society, 2022a). Medical advances and increased screening and awareness have improved breast cancer survival rates (American Cancer Society, 2022b). However, grave racial disparities in breast cancer survival and breast cancer experiences persist. The primary goals of the present qualitative study were to 1) illuminate how Black women’s positive and negative experiences with healthcare providers (HCPs) relate to their medical trust and breast cancer experience and 2) provide recommendations on how to improve the care of Black women diagnosed with breast cancer.

Racial Disparities in Breast Cancer Survival Rates

Although White women have the highest incidence of breast cancer in the United States, Black women are more likely to die from the disease (American Cancer Society, 2022b). The five-year survival rate is 92% for White women and 82% for Black women (American Cancer Society, 2022b). Black women have the highest mortality rate from breast cancer at every age when compared to White, Native American, Latina, and Asian women in the U.S. (American Cancer Society, 2020).

Despite this disparity, Black American women are vastly understudied in psychological research on breast cancer. A substantial majority of the research to understand the experiences of women with breast cancer has involved White women (Torres et al., 2016). Research that has focused on Black Americans consistently shows disparities in their treatment by medical professionals and health outcomes, including disparities for Black women with breast cancer (American Cancer Society, 2020; Lewis et al., 2015; Williams & Rucker, 2000). Thus, it is critical to examine the role of discriminatory treatment in healthcare on health and well-being in Black women with breast cancer.

Racial Discrimination and Systemic Injustice

Systemic racial injustice (i.e., racism that functions within and is enabled by policies, routine practices, and norms; Ture & Hamilton, 1967) and HCPs’ treatment of patients contribute to racial health disparities. Historically, enslaved Black people were mistreated, murdered, and experimented on without their consent by White medical doctors in service of economic and career achievements (see Washington, 2007). This racist, dehumanizing, and murderous treatment was widespread (i.e., routine) and condoned by U.S. policies. More recently, research finds that 21% of U.S. adults have experienced discrimination in healthcare settings, with racial discrimination being the most common type of discriminatory experience (Nong et al., 2020). Experiencing more discrimination is associated with worse physical health outcomes (e.g., hypertension) for Black Americans (Hill et al., 2017; Lewis et al., 2015). In HCP–patient interactions, Black Americans are routinely treated worse than White Americans interpersonally and in the quality of healthcare received (Williams & Rucker, 2000). Physicians are more contentious (Street et al., 2007) and show less positive affect (Johnson et al., 2004) when interacting with Black (as compared to White) patients. During HCP–patient interactions, Black patients experience less patient-centered care (i.e., care that recognizes and is attuned to patients’ unique and specific questions, needs, and preferences) than do White patients (Epstein & Street, 2011; Johnson et al., 2004). A systematic review found that higher HCP racial/ethnic implicit bias toward Black people is associated with less patient-centered care and less respect toward Black patients (Hall et al., 2015).

Discrimination and disparate medical treatment are relevant to the breast cancer context and may help explain racial disparities in breast cancer mortality. A study with 59,000 Black American women found that experiencing more discrimination is associated with higher breast cancer incidence (Taylor et al., 2007). The authors suggested that increased stress due to discrimination might negatively impact immune functioning and contribute to higher cancer rates (Taylor et al., 2007). Also, Black women are less likely than White women to be screened for breast cancer via mammograms (Alsheik et al., 2021; Bynum et al., 2005). In a study of cancer screening among 385,503 women in the U.S., Black women (compared to White and Asian women) were least likely to be referred for 3-D mammograms, which improve the cancer detection and reduce the need for additional diagnostic screening (Alsheik et al., 2021). The disparity persisted for Black and White patients who went to the same medical facility with 3-D mammogram technology (Alsheik et al., 2021). Collectively, these studies indicate that Black Americans are denied access to the same medical care provided to White Americans. This reality of negative and discriminatory treatment experienced by Black people in the U.S. broadly and in the U.S. healthcare system specifically can directly impact the health and well-being of Black women with breast cancer as well as their chance for survival of the disease.

Experiences with HCPs Among Black Women with Breast Cancer

Qualitative studies also have demonstrated HCPs’ suboptimal treatment of Black women breast cancer survivors. In a study of Black women breast cancer survivors in the Baltimore area, participants reported receiving inadequate information from oncologists about their diagnoses, treatment plans, potential side effects of treatment, instructions for follow-up care, and guidance about how to improve their overall health and quality of life (Royak-Schaler et al., 2008). Furthermore, participants reported needing to be assertive during medical interactions in order to receive information about the diagnosis, desiring to be an active collaborator and contributor to health-relevant decisions, and needing better HCP communication (Royak-Schaler et al., 2008). In focus groups conducted with 37 Black breast cancer survivors in rural North Carolina (Torres et al., 2016), women reported a lack of empathy, patience, and understanding from some HCPs which led to frustration and, at times, wanting a new HCP. In contrast, when HCPs were more collaborative in communication and decision making, women felt more at ease and cared for by HCPs and had more trust in HCPs’ recommendations (Torres et al., 2016).

Negative HCP–patient interactions have direct implications for patients’ medical trust. As research demonstrates (e.g., Keating et al., 2004; Martin et al., 2022), Black Americans have less trust in medical professionals than do White Americans. One explanatory factor is that Black Americans report that their personal physicians care less about their well-being (Martin et al., 2022). The importance of trust is exemplified in the finding that having higher trust in personal physicians is positively associated with more utilization of preventive health services such as mammograms (Musa et al., 2009). Taken together, these findings suggest that gaining a deeper understanding of how HCPs treat, communicate with, and respect Black patients, and particularly Black women with breast cancer, is imperative. Improving HCPs’ interactions with Black Americans may increase medical trust, which has emerged as a key factor in improving Black patients’ experiences and health outcomes.

Study Aims and Research Questions

The present study sought to provide important context about the nature of negative encounters with HCPs. For instance, what are physicians saying to Black patients in these encounters? How might these interactions influence Black patients’ healthcare experiences? Black women diagnosed with breast cancer have repeated interactions with HCPs during breast cancer diagnosis, treatment, and follow-up care. Thus, they are uniquely suited to voice their experiences during various healthcare interactions. Second, the present study aimed to identify specific recommendations for HCPs from Black American breast cancer survivors to improve their care. Although research has highlighted the negative experiences of Black Americans in healthcare, research is needed to understand contributors to positive experiences for Black adults in HCP–patient interactions. A primary goal of this study is to illuminate pathways to create more positive experiences for Black Americans in healthcare settings. Research questions were as follows:

1. What are the negative and positive experiences of Black women with HCPs in the breast cancer context that may contribute to medical mistrust, perceptions of HCPs, and well-being?

2. What recommendations do Black women have for HCPs on how to improve their care?

The present study used qualitative data from Project SOAR (Speaking Our African American Realities), a community–academic research partnership. The larger project focuses on understanding the experiences of Black women with breast cancer and specifically on the relevance and role of the Strong Black Woman schema in the breast cancer context (Denyse et al., 2022; Denyse et al., invited resubmission). Thus, the present study was guided theoretically by literature on the Strong Black Woman schema. The Strong Black Woman schema has been defined as the ways in which Black women are propelled by historical and societal factors to present an image of strength and prioritize caregiving for others at the expense of their own well-being (Walker-Barnes, 2014). At the same time, Black women have cultivated positive qualities including independence and pride in their culture (Walker-Barnes, 2014). In addition to illuminating the relevance of the schema in the experience of Black American breast cancer survivors (Denyse et al., 2021; Denyse et al., invited resubmission), the rich qualitative data allowed examination of the present research questions.

Method

Participants and Recruitment

This study was approved by the UCLA Institutional Review Board. Black American women diagnosed with breast cancer were recruited to take part in Gatherings (i.e., culturally curated focus groups) in order to “give voice to the unique experiences of African American women with breast cancer.” Women who met the following criteria were eligible: 1) Black American woman; 2) diagnosed with breast cancer (any stage, any time elapsed since diagnosis); 3) at least 21 years of age; 4) able to respond to questions in English; and 5) California resident (due to funding source).

The Project SOAR team recruited women by distributing flyers electronically via email (e.g., through the listserv of Carrie’s TOUCH, a non-profit organization based in Sacramento, California, for Black women with breast cancer; Carrie’s TOUCH, 2021) and Carrie’s TOUCH social media channels. Recruitment materials were also distributed in person (e.g., Living the New Normal Cancer Survivors and Caregivers Conference at the Martin Luther King Jr. Community Hospital in Los Angeles, CA, and various events in Sacramento, CA, and Oakland/East Bay Area, CA). Women signed up for participation in person or via phone or email.

Procedure

Three Gatherings were conducted between March and June of 2019 in California (Sacramento (n = 13), Los Angeles (n = 7), Oakland (n = 17)). With the goal of increasing comfort, trust, and openness during the session, each Gathering was an all-Black and all-woman space. Gatherings were held between 9:30 am and 2:00 pm on Saturdays. In each Gathering, participants 1) were given an information sheet and provided oral consent to participate; 2) completed a sociodemographic questionnaire; 3) were offered breakfast; 4) participated in an icebreaker activity; 5) took part in a semi-structured two-hour group interview conducted by Denyse and assisted by Martin; 6) listened to a guest speaker (i.e., an individual who promoted inspiration); and 7) were offered lunch in which group discussion continued (see Denyse et al., 2022 for detailed method description). Additionally, participants received a $50 gift card for taking part.

During the Gatherings, women responded to questions related to the Strong Black Woman concept, shared their personal histories, recounted interactions with HCPs, family, and friends, and offered recommendations for oncologic professionals. The present study focused on participants’ responses regarding interactions with and perceptions of HCPs and the healthcare system, which participants shared throughout the entire interview period. The results include responses to specific semi-structured interview questions (e.g., “Do you think others, such as your family, friends, or medical team expected you to be a Strong Black Woman during your breast cancer journey? If yes, who and how?” and “What suggestions do you have for things that would be useful to Black women and their loved ones who are dealing with breast cancer?”). A methods guide is available in Supplemental Materials.

Analytic Plan

Gatherings were audio-recorded and transcribed. Data were analyzed via reflexive thematic analysis (Braun & Clarke, 2006) using NVivo (Version 12) qualitative analysis software (QSR International Pty Ltd., 2018). Reflexive thematic analysis involves discovering and distinguishing codes within qualitative data to identify patterns, aiming to provide a rich understanding of participants’ experiences pertinent to specific research topics and questions (Braun & Clarke, 2006). Data were analyzed by a group of four trained coders (three doctoral students in psychology and a radiation therapist/community healthcare advocate), with peer debriefing supervision led by a postdoctoral scholar well-versed in qualitative research. Following reflexive thematic analysis procedures, the team familiarized themselves with the audio recordings of the three Gatherings, coders took an inductive then deductive approach to creating codes (Braun & Clarke, 2006), and coders individually coded the data for both latent and semantic codes (Braun et al., 2019). Such coding strives to capture the fullness of the data and ensure the totality of what participants expressed is analyzed. Through weekly meetings, codes pertinent to the two research questions and candidate themes were discussed, and themes were finalized. Reflexivity was emphasized before and during the coding process; coders openly discussed their perspectives and biases that may influence how data were analyzed and interpreted (Berger, 2015). Reflective memos strengthened the analysis process (e.g., the importance of capturing participants’ specific recommendations to HCPs). Previous versions of themes included “antagonistic healthcare providers” and “models and recommendations of care”; iterative review resulted in the final themes.

Results

Participants were 37 Black American women with a breast cancer diagnosis who were diverse in age (M = 59.27 years, SD = 14.27, range = 30–94), months since first breast cancer diagnosis (M = 105.62, SD = 96.89, range = 2–343), breast cancer stage (0–3), annual household income (less than $25,000–more than $100,000), and education (completed some high school–post college graduate; demographics in Table 1).

Table 1.

Demographic Characteristics of Project SOAR Participants.

Characteristic	M (SD) or n (%)
Age (years)
Mean (SD)	59.27 (14.27)
Range	30–94
Months since first breast cancer diagnosis
Mean (SD)	105.62 (96.89)
Range	2–343
Breast cancer stage (n (%))
0	3 (8.11)
1	12 (32.43)
2	9 (24.32)
3	7 (18.92)
4	0
Unsure	6 (16.22)
Annual household income (n (%))
Less than $25,000	4 (10.81)
$25,000–$49,999	10 (27.03)
$50,000–$74,999	2 (5.41)
$75,000–99,999	4 (10.81)
> $100,000	12 (32.43)
No response	5 (13.51)
Educational experience (n (%))
Some high school	1 (2.70)
High school graduate	1 (2.70)
Technical/vocational	2 (5.41)
Some college	15 (40.54)
College graduate	8 (21.62)
Post-college graduate	10 (27.03)
Gathering location (n (%))
Oakland	17 (45.95)
Los Angeles	7 (18.92)
Sacramento	13 (35.14)
Health insurance
Commercial insurance	13 (35.14)
Managed care plan (HMO, etc.)	14 (37.84)
Medicaid/Medi-Cal	6 (16.22)
Medicare	9 (24.32)
Tricare	1 (2.70)
Veterans Affairs (V.A.)	1 (2.70)

Note. This demographic information and table appear in other Project SOAR manuscripts. Participants were asked to select their health insurance from the above choices and had the option to select multiple choices. Thus, percentages include participants who may have selected multiple categories.

Four themes were identified that were central to participants’ experiences with HCPs. Below, each theme is described in detail. Representative quotes from Gathering participants provide illustrative examples. Pseudonyms are used to protect participant identity.

Theme 1

Individual and Systemic Injustice Directed at Black Breast Cancer Survivors.

Participants described the complex challenges inherent in navigating harmful and unjust experiences in the healthcare system and from specific HCPs. Participants shared that they were mistreated in the oncologic context and posited that their care would have been different if they were not Black women. Participants experienced discrimination, a lack of empathy, and a lack of patient-centered care from HCPs.

I think that because I was a Black woman, I wasn’t treated with the best medical treatment. My oncologist, she just bombarded me with the chemo that knocked me out for almost a week. And she could have spread it out. I found out afterwards that she could have gave me smaller doses and where it wouldn’t just make me sick and just like I was in hell. But because she didn’t do that, it seems like every three weeks I was in hell for a week, almost, and then I would come out, and then I would go for a treatment, and I go back to hell. And then with radiation, I had third degree burns from that with open wounds from the radiation, and come to find out, that could have been different too. But because I was Black I believe I wasn’t given the right medication treatments. Brenda, 10-year survivor

Furthermore, participants described being treated as a “checklist item” rather than as patients in need of care from an attentive and understanding oncologic team. This included HCPs using inaccessible language (i.e., medical jargon that was not explained), not listening to patients as they indicated how they were feeling or what they needed, and making treatment recommendations that were not tailored to the patient which led to serious medical complications in some cases. Participants also reported experiences with discrimination. For example, participants reported feeling as if they did not belong in certain environments (e.g., HCPs referring them to support groups that were predominantly White).

My medical team got offended when I questioned it [treatment recommendations], when I asked for second opinions. When I asked for a clinical trial, I got questioned, like, ‘What are you asking us that for? We’re telling you what you’re gonna do and this is what you’re gonna do.’ And, I felt like they weren’t listening to me. And then when I did get a second opinion, they had the nerve to be offended. When I tried to leave that oncologist, they had the nerve that their personal feelings got in the way…I kept asking him [the oncologist], ‘I don’t understand why you’re upset. This is my body and I have the right to have the best treatment that I can possibly have. And I can question, I have the right to question it . . .’ And then I got confirmation that I was being treated kind of poorly because the first support group I went to was all White women, and a couple of Asian women, and they were all having a wonderful experience with their oncologist. They didn’t get told [their diagnosis] over the phone like I did. They got sent to their oncologist and surgical team and get second opinions. Where when I was getting a second opinion or asked people, and I was getting like told [by the oncologist] why am I questioning it. And they didn’t understand, the women in the support group, the White women, didn’t understand why I was having such a hard time. So I think, I think my color of my skin definitely affected how I was treated. Ramona, 10-year survivor

Participants shared experiences with antagonistic healthcare providers who were hostile and blatantly disrespectful. For example, one participant described an interaction in which she was discussing breast cancer treatment options with a surgeon and wondering if chemotherapy was the best treatment plan:

The first surgeon that I had said if his mother were to tell him that she wasn’t going to have chemotherapy he would slap her. So we said, ‘Thank you very much. Thank you for your time.’ We were out of there. Roxanne, 4-year survivor

Participants commented that these experiences with individual HCPs were rooted in a system that treats Black women inequitably. Women described issues with receiving health insurance, support, and necessary resources that negatively influenced their care, breast cancer experience, and lives.

I had my bilateral mastectomy. . . I went home and–tubes in both breasts. And on the 10th of October my doctor called me and said that it was early, but she was gonna have to remove the tubes because my insurance had ended, and I had no more insurance. So I was without medical attention from October until February …I wasn’t even given a doctor. I was given a nurse practitioner. And I was so upset . . . You know, I felt mutilated, and every negative feeling about my body and I knew–I said, I was always a strong person, but this was really hurtful. Yvette, 3-year survivor

Theme 2

Protecting Myself from an Untrustworthy Medical System.

Participants described how the history and ongoing events of systemic and interpersonal mistreatment by the medical system and HCPs shaped mistrust among Black women. The women reported having to advocate for themselves in the medical context during their breast cancer experience in order to avoid being discriminated against and to ensure receipt of good care.

I had to have it out a little bit with my oncologist (laughing), because they were being a little bit too cookie cutter . . . And I had to explain to him, I’m not trying to be a statistic here . . . And every day I get up, I’m fighting for my life . . . And I need for you to understand that and don’t treat me like part of the process. So when I’m telling you something, I need you to listen to what I’m saying . . . And right now, you’re not listening. Otherwise I wouldn’t be in a situation of having pneumonia and having an allergic reaction to the chemo, Taxol, and going completely undetected until I’m at the family practitioner and he’s running these tests and discovers it. You know? So that was part of the frustration. But the moment I really had that discussion with him, I saw a different side of him. Cynthia, 9-month survivor

Another participant stated:

I became my own self’s best advocate. Because I had to and I knew I had to. I knew that if I went into a place and I felt like I wasn’t getting what I needed in order to survive this journey, it was up to me to provide and I don’t know whether that’s Strong Black Woman or just self-survival. Marjorie, 21-year survivor

Relatedly, participants engaged in actions that included seeking out information on their own, working with community organizations to help them navigate care, and demanding respect in the face of hostile HCPs. For example, one participant shared that after witnessing other family and friends struggle with their cancer journeys and in medical encounters specifically, she wanted to change the narrative for herself when she was diagnosed with breast cancer.

So, the doctors were blown away when I walked into the first appointment at [medical center] with a referred surgeon, [name]. I came in with my lawyer on the phone, on the Zoom call, three lawyers, two different professional medical specialists and then probably 15 friends. So, they were absolutely intimidated. Anita, 2-month survivor

Theme 3

Stereotypes Interfered with My Care.

Participants noted that HCPs made comments that reflected stereotypes about Black women. Some participants believed that those stereotypes led HCPs to minimize the severity of their breast cancer. For example, participants shared that HCPs perceived them as Strong Black Women. Some women were advised by HCPs to modify their appearance (e.g., clothing) to “look sick” during their oncologic appointments in order to receive proper care, with the implication that being a patient diagnosed with breast cancer was not sufficient to receive proper care.

She [oncologist] says, ‘You don’t look sick.’ And I said, and it startled me a little bit, I said, ‘Well, I don’t want to be sick and I don’t want to feel sick.’ She said, ‘Then I’m not telling you to,’ she said, ‘but what I’m telling you is that doctors treat you different when they sometimes,’ and this is out of her own mouth, she said, ‘Sometimes, when you don’t look like you need the help or that you’re sick,’ quote-unquote, ‘they don’t treat you that way.’ And she said, “I had a friend,” she’s telling me about a friend of hers that had cancer. She said she would come, make-up to the tee and, you know, all this, put together, kind of like me, and she said they didn’t give her all the treatment that she needed to get because they just didn’t, they just kind of thought, oh, well she’s okay, she’s fine . . . you know, others are going through, they’re taking it much harder, whatever…. And so, she said, sometimes you don’t always have to be so put together. Janet, 5-year survivor

Participants also shared that HCPs perceiving them as a Strong Black Woman led to negative interactions in which HCPs lacked empathy. For example, many participants reported receiving a phone call from their HCP to inform them of the breast cancer diagnosis (note that Gatherings were held in 2019, prior to the COVID-19 pandemic). Often, HCPs did not ask if it was an appropriate time to talk to the participant before non-empathetically telling her the diagnosis.

I think medical staff, I think yes [treated me like a Strong Black Woman]. Because I think with my experience the whole way that they present it to you, I mean the phone call to tell you over the phone, I’m at work, you know, when I get the call that my . . . biopsy was positive for cancer. How do you call somebody and tell them that over the phone at work? And just even like with talking to my doctors and so forth…it’s not really personable in that way…I saw plastic surgeons. And that experience was just very cut, dry, it’s like, ‘This is what we’re gonna do,’ and basically that’s just it. I’m asking how is this gonna work, about the reconstruction [surgery]. It was just very short with me, and very like, ‘Nope… we can’t save them [her breasts]. They’re no good.’ But not even in a sympathetic way . . . I don’t know if these conversations would have been had with another White woman . . . Maybe I showed too much strength. But, I just think to assume, because you don’t see somebody with their emotions on their sleeve, that they’re not feeling something (tearful voice). You know? I think that’s what I got from the medical team. That, you come in here like you can take it, so this is how I’m gonna dish it to you. Charlotte, 10-month survivor

Theme 4

Good Care Should Include Compassion, Respect, Shared Decision Making, and Tailored Support.

Though described less frequently than negative encounters with HCPs, participants described instances in which they had received support, information, and resources from HCPs that were specifically tailored to their preferences, needs, and situations. These instances provide models of the positive care Black women diagnosed with breast cancer wanted to receive. Examples included being offered a clinical trial, treatment options, options for psychological services, and the opportunity to use a patient navigator. Participants described being treated as valued partners when making decisions with HCPs.

Each step of the way, they have these nurse navigators that were specialists in their particular areas, oncology nurse navigators I guess they call them now. The Women’s Center navigator who goes in with you while you’re doing your biopsy and plays the little calming music . . . I think that my navigator gave me this binder with all this information that was just a little overwhelming at first, but as I went through it and I went from oncologist to surgeon and each section had a place to put their information and some pre-information in there, that became very beneficial . . . It’s so helpful to have the navigators tell you what to expect . . . From my perspective, having that available to me early on helped the whole process all the way through the end, you know. Important for the end and how many days are the ports in and you can start your chemotherapy. It was all written out and I just had to get the courage… the energy up to read it. Wendy, 1-year survivor

Additionally, one participant noted that her oncologist shared that she was unsure about how to proceed with her treatment.

She [the oncologist] said, ‘You know, I don’t know what to do with you,’ she said, ‘I’m not used to seeing Black women come into care so early. And it’s a question about what do we do with you?’ She said, ‘My gut tells me there’s more there than what we see, but what’s in front of me looks very simple.’ And so she said, ‘Are you open to me sending your stuff out and letting somebody else look at it and possibly considering a clinical trial?’ And again, there’s my ignorance again on I don’t want to be experimented on, but my sister [an oncologic nurse] says, ‘No, you want to be considered because rarely do you get to,’ she says, ‘in my line of field, rarely do I see my patients being offered that, that’s an opportunity, so take advantage of it.’ And so I felt valued that this person, this oncologist, thought enough of me to say ‘I don’t know. Let me send it back. Let me put some more eyes on it, we’ll come back, and we’ll talk about it and you make a decision.’ And they put me in this breast cancer trial to look at early treatment or Treat Early and Treat Hard and to see what the long-term effect was, and I’m glad I did it. Tanya, 10-year survivor

Participants also expressed specific recommendations for HCPs (see Table 2). This included specific language and behaviors they wished HCPs had exhibited as well as positive interactions they wished were common with oncologic teams. Recommendations also included doctors ensuring that patients’ situations and needs guided clinical decisions. For example, participants suggested that newly diagnosed patients should be offered mental health services.

Table 2.

Recommendations from Gathering Participants for Healthcare Providers.

Recommendation	Description
Indicate empathy/compassion	Recognize the difficult journey that a breast cancer patient is enduring and let them know that you are there for them and that you care about their health and well-being.
Demonstrate respect	Through verbal and nonverbal communication and behaviors indicate that the patient matters and they area priority (rather than another patient on your list). Do not talk down to, berate, demean, or be antagonistic toward patients.
Listen	Truly listen to and honor patients. For example, when communicating with patients (e.g., over the phone) ask them if it is a good time to talk to them and honor their response. If necessary be willing to adapt to what the patient indicates they need from their healthcare provider.
Explain	Ensure that patients understand what you are communicating with them regarding their diagnosis, treatment plan, follow-up care, and so on. Welcome their questions and answer them thoroughly. Limit the use of medical jargon when possible and/or fully explain and define medical/technical terms.
Offer resources and tailored support	Provide care that is specific to the wants, needs, and preferences of the patient. In doing so, consider and offer resources that might be useful to patients. Suggested resources include clinical trials, nurse navigators, mental health services, and support groups. Be honest, mindful, and considerate of patients’ identities when discussing these resources (e.g., are the support groups you are recommending predominantly or exclusively attended by White women? Are there more diverse support groups or Black support groups available?).
Share decision making	Think of yourself as a part of a team of people in the patient’s life that will help them through their breast cancer journey. Thus, provide expert advice, recommendations, and share in the decision making with the patient to ultimately do what is right for the patient.
Recognize humanity	Recognize that each patient is a unique human being. Avoid stereotyping (e.g., assuming because they don’t “look sick” they may not need as much help or be in as much pain as someone who “looks sick”). Do not be offended by patients’ questions or desire for second opinions. Instead, recognize them as fellow human beings striving to survive, thrive, and make the best decisions for their lives. Strive for cultural competency by identifying your own gaps in understanding of how stereotyping may influence behaviors and the roots of medical mistrust in the Black community and, ultimately, be open to and take responsibility for learning and improving.

Additionally, participants suggested that medical training should include skills on demonstrating compassion, respect, shared decision making, and tailored support so that such factors could become a standard of care for each patient, each time (see Table 3 for additional participant quotes).

It would be nice if they could show a little more compassion. Because this [cancer diagnosis] is a, this is a brick on you. You know? But when people do that, it kind of opens them up, they’re kind of vulnerable too. But it would be nice if they could take your hand and say, ‘I know this is going to be difficult for you. But we’re here for you’, you know? it doesn’t take anything. But I don’t think they realize it. I mean it’s something–that could be part of the continuing education or something. Staff meetings or something . . . You know, open yourself up a little bit. You know, doctors and nurses and show more compassion for the person that’s going through this, that’s getting this news. Not just - Hey, it’s during our office hours, if we want to make, we have to make these calls and here, blah, blah, blah. Vickie, 21-year survivor

Table 3.

Additional Participant Quotes.

Theme	Quote
Individual and Systemic Injustice Directed at Black Breast Cancer Survivors	“… how I’ve attacked this breast cancer journey, because of, not because of my medical providers, I feel like knowing the statistics you know I knew that going in, not just when it comes to breast cancer, I knew how disproportionately you know, we die of other diseases and we have other diseases and I also know how the medical community is. It’s a big process line, they’re trying to process people in, process people out, I mean you have your blocked time that you go in, you talk to the doctor, they’re taking notes while you’re talking to them. I mean I get, I knew that going in, so it kind of made me feel like I was geared up for a fight and not necessarily a fight against them but a fight against the system.” Maxine, 2-month survivor
Protecting Myself from an Untrustworthy Medical System	“So, that became a quest for me to find out as much about breast cancer as I possibly could and on top of that I was given this diagnosis of DCIS, the non-cancer cancer and so if I don’t have cancer and if I do have cancer why is the treatment the same? Why is it not different? You know, all of those things were the things that I needed to know, you know in order to like make a decision. So I did, I spent days in that library just sitting there on the floor, just reading as much as I possibly could before I went back to the doctor.” Marjorie, 21-year survivor
Good Care Should Include Compassion, Respect, Shared Decision Making, and Tailored Support	“My doctor recommended people to come see me that were their patients that had gone through [breast cancer], White women of course, but people came for me. They were looking for me, to help me at that particular time and so I feel like that’s kinda like what helped in my process.” Evelyn, 22-year survivor
	“When you see people in the movies go through cancer diagnosis, they sit and they tell them what’s going on and a person goes into like a weird mode where they can’t hear anything and then like brings it back. But, as you see a part of the movie, part of what they do is that they have to go to therapy. I don’t know if it happened to you all, but I don’t think that’s a requirement of your care. And I think if you’re really thinking about someone’s full care, going through something like cancer, anything that’s life changing or if it’s debilitating that [therapy] should be a part of your care. You can deny it, but if it isn’t offered as a part of your treatment, I think that you’re going to do a disservice to anyone for going through something like this.” Renee, 1-year survivor

Discussion

These qualitative data highlight four important themes that serve to enrich the current knowledge base and deepen the understanding of specific challenges Black women face when they interact with HCPs during breast cancer diagnosis and treatment. Findings demonstrate both the negative and positive (albeit less frequent) interactions of Black women diagnosed with breast cancer with HCPs and illustrate how these interactions may impact survivors’ medical trust. This study also provides recommendations for how to improve healthcare for Black women diagnosed with breast cancer.

This study builds on previous research (e.g., Royak-Schaler et al., 2008; Torres et al., 2016) by adding specificity to the nature of contentious interactions between Black women diagnosed with breast cancer and HCPs. It also illustrates what HCPs say in the oncologic context that indicates hostility and a lack of empathy (e.g., calling breasts “no good”). Knowing these experiences is vital as medical mistreatment and racism cannot be addressed and eradicated if existing injustice is not understood.

Participants described how HCP mistreatment negatively affected their health and well-being. This illustrates racial weathering (i.e., how social inequity negatively impacts physical outcomes; Geronimus, 1992) and the unique challenges Black women with breast cancer may encounter as they navigate experiences of racism and sexism as women with multiple intersecting and societally stigmatized identities (Crenshaw, 1989). Further, in line with the suggestion that psychological research would benefit from a socio-ecological model in which historical and systemic factors are acknowledged and considered (Trawalter et al., 2020), participants’ stories demonstrated individual and systemic injustices experienced by Black women as well as the historical foundation upon which these injustices are built.

The present data illuminate why Black Americans may not trust the medical community. In the negative medical interactions shared by participants, HCPs were not showing themselves to be trustworthy (e.g., lacking empathy, demonstrating blatant disrespect) and may even have been eroding patients’ trust during interactions. Participants also described contentious and hostile interactions in which HCPs did not behave as if they cared about patients’ well-being, which could certainly influence trust (see Martin et al., 2022) and health outcomes.

Notably, participants in each Gathering discussed the need to advocate for themselves with HCPs to receive the treatment they needed, wanted, and deserved. While fighting for their survival, participants had to devote time, energy, and resources fighting to be cared for properly. In some cases, HCPs may not intend to harm Black patients, and even discriminatory treatment may occur without HCPs’ awareness (Hall et al., 2015). However, lack of mal-intention does not negate the negative impact medical care can have (such as that described by Project SOAR participants).

Participants also noted that they were stereotyped by HCPs, which indicates a lack of recognizing the full humanity of Black women. Each participant had unique breast cancer experiences, access to and knowledge about resources, and medical and social needs. Recognizing patients as full human beings rather than stereotypes is critical to providing adequate care. As one participant stated, “We do expect a certain amount of humanity from them [HCPs]. And I think that we should continue to expect even more humanity. Because it is something that we deserve” (Marjorie, 21-year survivor). Stereotyping by HCPs indicates a lack of cultural competence (i.e., “the demonstration of awareness of cultural norms and beliefs, knowledge of how culture may differ across groups, being sensitive to culture, and ultimately making adjustments to accommodate culture”; Husain et al., 2019, p. 740). Incorporating cultural competence in healthcare is recommended to improve the experiences of Black breast cancer survivors (Husain et al., 2019).

HCPs indicating that they perceived their Black women patients as Strong Black Women—with the implication that they were not in as much need of care—aligns with research demonstrating that HCPs hold false stereotypes about Black people (e.g., Black [compared to White] people have thicker skin) which is associated with believing Black people feel less pain and making less accurate treatment recommendations (Hoffman et al., 2016). Our evidence highlights the negative impact of HCPs’ stereotyping and discrimination on Black women with breast cancer. As previous researchers have suggested racism (not race) is a major contributor to health disparities (e.g., Benjamin, 2022; Du Bois, 1899), future research should examine how HCP mistreatment may contribute to racial disparities in breast cancer mortality. For example, are there specific healthcare provider behaviors that are significantly related to worse breast cancer outcomes? Are there particular healthcare centers where Black women with breast cancer receive worse care? Addressing these questions could bring further clarity to current medical racism and illuminate how to address disparate treatment.

Furthermore, participants described HCPs attempting to “help” by asking the patient to change in some way (e.g., change her appearance to look sicker) in order for other HCPs to take her diagnosis seriously. This strategy to address inequity is highly problematic as it places the onus of attenuating discrimination on the target of discrimination rather than the perpetrator. Instead, the present data highlight the need for HCPs and institutions to acknowledge and be held accountable for inequitable and/or damaging treatment.

Although less frequently described than negative experiences, instances occurred in which HCPs provided care that was respectful of and responsive to patients’ preferences and needs. Additionally, in some cases, HCPs shifted their behavior after patients advocated for better care. This indicates that positive HCP–Black patient interactions are happening and, with correction and accountability, positive changes can occur. Importantly, participants shared actionable ways HCPs can create more equitable and patient-centered treatment. Beyond recognizing their individual humanity, it is imperative that HCPs listen and are responsive to patients’ unique situations and demonstrate compassion. This research adds to previous evidence emphasizing the importance of and how to indicate compassion. For example, a systematic review found that specific behaviors (e.g., indicating support by verbally acknowledging patient’s concerns and making eye contact) were effective in improving patients’ perceptions of HCPs’ compassion (Patel et al., 2019). HCPs’ special attention to demonstrating compassion to Black patients could be critical to improve Black healthcare experiences.

Notably, the present sample included Black women who had more education and higher income than Black Americans on average. The modal education level of participants was some college. In the U.S., the modal education level is high school graduate or less (Tamir et al., 2023). Although this difference may limit the findings’ generalizability, it also provides interesting insights. For instance, having lower socioeconomic status (SES) is associated with worse quality of medical care (Caballo et al., 2021), and over and above SES, Black Americans are treated poorly in healthcare (Williams et al., 2010). The present study documents specific examples of high-income and highly educated Black women who encountered negative healthcare experiences. This study’s findings from California residents align with those of two other qualitative studies conducted with Black women breast cancer survivors who had very different geographic locations and income levels (Royak-Schaler et al., 2008; Torres et al., 2016).

Ultimately, the present study aimed to uplift the voices of Black women and promote understanding of their experiences in the context of breast cancer diagnosis and treatment to provide actionable insights for healthcare providers. To better understand the perspectives of Black Americans and improve healthcare, it is imperative to hear their stories and experiences of injustice and attend carefully to their recommendations for how to improve care. When Black women diagnosed with breast cancer are “fighting for their lives,” they are fighting against the highest mortality rates of the disease (American Cancer Society, 2022b). As this study demonstrates, they oftentimes also are fighting inequitable and discriminatory healthcare systems (Nong et al., 2020) and negative HCP interactions which directly impact their quality of care and chance for survival. Thus, this paper is a call to action not only to listen to and understand Black women’s experiences but also to create positive changes in the healthcare system to provide excellent, respectful, compassionate, and equitable care for Black women battling breast cancer.

Supplementary Material

Supplemental material for this article is available online.

Data Transparency

The data for the present study are not currently openly available. This is because 1) we did not explicitly ask for open data availability from our Gathering participants (and all participants are not currently able to be contacted) and 2) maintaining participant anonymity is an uppermost concern for our research team. Others who know our participants (e.g., oncologists) may be able to tell participant identity if all data were released due to specific information shared, speech patterns, etc. Additionally, historically and presently some Black Americans have justifiable mistrust in research, researchers, and medicine. We believe maintaining participant trust and anonymity is centrally important and we wish to maintain good strong relationships with our Gathering participants. We are currently working on several manuscripts for publication.