Negotiating cancer alone: A qualitative study exploring care experiences of racially and ethnically diverse women diagnosed with breast cancer during COVID-19

Abstract

COVID-19 has critically impacted cancer care services including reduced screenings, diagnoses, and surgeries; particularly among Black and Latina/x women who already suffer worse outcomes. This qualitative study explored the care experiences of a diverse sample of breast cancer survivors (N = 21; 7 Black, 4 Hispanic, 10 White) undergoing treatment during the pandemic via online semi-structured interviews. Grounded theory analysis yielded the core category “negotiating cancer alone,” that included: (1) psychological distress, negotiating the cancer trajectory in isolation; (2) provider/healthcare system diagnostic and treatment delays; (3) heightened anxiety about treatment delays causing cancer progression; (4) supportive care limitations; and (5) disparate experiences of cancer care disruptions. Black and Latina/x women described greater delays in care, financial challenges, treatment complications, and insurance limitations than White women. The study identifies cancer patients’ pandemic-related psychological, healthcare system, and health equity challenges and suggests recommendations to support their increased psychological needs during oncologic care disruptions.

Introduction

The COVID-19 pandemic has had adverse consequences on cancer care delivery, including reductions in cancer screenings, diagnoses, and significant changes to treatment protocols (American Association for Cancer Research [AACR], 2022; Carvalho et al., 2022; Riera et al., 2021; Unger, 2022). Recent reports indicate the following reductions: 58% in the number of screenings, 89% in diagnoses, and 64% in treatment during the height of the pandemic (Carvalho et al., 2022; Unger, 2022). The AACR Report on the Impact of COVID-19 on Cancer Research and Patients Care estimated that 64%–87% of cancer patients had experienced delayed surgeries and that radiotherapy regimens were initiated between 8 and 45 days late (AACR, 2022). These delays extended to palliative care services, with up to 48% of providers reporting interruptions in services (AACR, 2022; Riera et al., 2021). Modifications to treatment pathways can have long-term implications for survival, as they can lead to complications or the inability to timely detect and manage disease progression (Chavez-MacGregor et al., 2022). The literature has also documented the pervasive impact of the pandemic on mental health and overall well-being of patients, as evidenced by elevated rates of social isolation, financial concerns, food insecurity, worsening of mental health status, and heightened worry related to access to care and cancer recurrence (Amaniera et al., 2021; Colomer-Lahiguera et al., 2021; Dowling et al., 2022; Zhang et al., 2022).

In breast cancer care, declines have been registered for screening (87%) (Fasano et al., 2022; Richman et al., 2023; Tsapatsaris et al., 2022; Yacona et al., 2022), diagnostic mammograms (21%) (Cairns et al., 2022), and surgeries (64%–87%) (AACR, 2022; Yacona et al., 2022). Between 38% and 44% of breast cancer patients reported delays or disruptions to their care, with younger women, socioeconomically vulnerable individuals, and those with Medicaid insurance experiencing greater vulnerability. Women experiencing disruptions to their oncology services reported greater effects on emotional well-being, higher levels of anxiety and depression, greater emotional vulnerability (Kripalani et al., 2022; Savard et al., 2021; Seven et al., 2021; Soriano et al., 2021) and decisional conflict (Haier et al., 2022). It is critical to contextualize COVID-19-related treatment disruptions within the well-documented landscape of pre-existing disparities (Giaquinto et al., 2022; Siegel et al., 2023; Yacona et al., 2022) and highlight how altered treatment protocols have exacerbated the disproportionate burden of the disease (Patel et al., 2022). Women from racial and ethnic minoritized groups already experience greater disparities: Non-Hispanic Black (hereafter Black) women are four times more likely to have their care delayed, which contributes to lower survival rates (Mitchell et al., 2022). To date, despite declines in mortality rates between the late 1980s and 2020, Black women are still 40% more likely to die from breast cancer than White women (Giaquinto et al., 2022). Additionally, emerging evidence has documented that Black and Hispanic/Latina/x (hereafter Latina/x) patients were more likely to report involuntary treatment delays during the pandemic; Black women, in particular, were at greater risk of reporting delays of more than 4 weeks (Alvidrez et al., 2019; Fasano et al., 2022; Patel et al., 2022; Yacona et al., 2022). When compared to Non-Hispanic White (hereafter White) respondents, Black and Latina/x survivors experienced greater food insecurity, concerns regarding financial stability and affordability of treatment (Patel et al., 2022). Minoritized women have been also greatly affected by COVID-19-related financial vulnerability due to loss of employment and insurance coverage, as well as caregiving burden, social isolation, neighborhood-level factors, and systemic racism in health care (Cairns et al., 2022; Dalsania et al., 2022; Du et al., 2022; Fasano et al., 2022; Fu et al., 2022; Hamlish and Papautsky, 2022; Mitchell et al., 2022; Newman et al., 2021; Patel et al., 2022; Richman et al., 2023; Siegel et al., 2023; Wilkinson and Gathani, 2022; Yacona et al., 2022).

Findings confirm the pervasive distress associated with the cancer diagnosis, concerns for prognosis because of delayed or altered treatments, increased vulnerability to COVID-19, and significant isolation from personal and professional support (Göral Türkcü et al., 2021; Rose et al., 2022; Savard et al., 2021; Sokas et al., 2021). Altered care protocols have significantly impacted Black and Latina/x women who already suffer from more aggressive and advanced breast cancer due to interacting biological and social determinants of health (SDoH) and related inequities (Cairns et al., 2022; Dalsania et al., 2022; Du et al., 2022; Fasano et al., 2022; Figueroa et al., 2021; Fu et al., 2022; Hamlish and Papautsky, 2022; Newman et al., 2021; Patel et al., 2022; Richman et al., 2023; Tsapatsaris et al., 2022; Wilkinson and Gathani, 2022; Yacona et al., 2022). While qualitative studies have started to provide in-depth information about patients’ experiences coping with treatment decision-making and care disruptions, few have involved a diverse group of women (Rose et al., 2022; Savard et al., 2021). Learning about these issues from the perspective of the women themselves is key to comprehending the experience of minoritized groups of cancer patients and to designing equitable models of care delivery and multilevel interventions that can alleviate current survivorship disparities. This study qualitatively explored the experiences of racially and ethnically diverse women receiving breast cancer care during the pandemic. In particular, the present work aimed to develop a theoretical framework illustrating breast cancer survivors’ treatment decision-making, the social-contextual factors affecting their quality of life (QoL), psychosocial well-being, and any differences in treatment experiences across racial and ethnic groups.

Method

Ethical approval

This study was reviewed and approved by the Institutional Review Board of the University of Houston (STUDY00002665, approval date 12/15/2020). Data were collected as part of a mixed methods project on comparing COVID-19-related breast cancer care disruptions and health-related QoL outcomes among a diverse sample of Black, Latina/x, and White women (Acquati et al., 2021). After completing the quantitative survey, women could indicate their interest in participating in a semi-structured interview to better understand their experiences with treatment decision-making and factors affecting QoL. The research team contacted those who expressed interest via e-mail/phone and informed them about the nature of the study and the focus of the interviews. Participants were consented orally and were informed of the voluntary nature of the interview, and their ability to decline to answer any questions or withdraw from the study at any time. Permission for interview audio-recording was solicited and granted prior to commencing the research activities.

Reflexivity statement

In approaching our investigative work, we recognize the diversity within our team, comprising individuals from various racial, cultural, and linguistic backgrounds. Our team includes members from minoritized groups, mothers and female academics who faced significant professional and caregiving responsibilities while the study was conducted, immigrants who bring unique perspectives shaped by their cultural experiences, and non-native speakers navigating the intricacies of language; all of us with multiple identities, aspects of privilege, and power. We understand that our unique backgrounds may have influenced our viewpoints, and we have striven to leverage this diversity to foster a more comprehensive understanding of the life experience of the women included in the study.

Study design, recruitment, and sample

A constructivist grounded theory approach (Charmaz, 2014) guided the study research design. A constructivist view challenges positivists assumptions about the world as an objective, singular, external reality waiting to be discovered, and instead posits that human beings socially construct multiple realities based on their social interactions and unique experiences. This approach adopts a reflexive position on modes of knowing and representing studied phenomena, wherein researchers’ theoretical analyses are understood to be “interpretive renderings of a reality, not objective reportings of it” (Charmaz, 2014). Accordingly, this study sought to understand the social processes, meanings, and contexts informing women’s experiences of seeking and receiving treatment for breast cancer during the COVID-19 pandemic.

A community-engaged approach was used to guide recruitment strategies and develop the interview guide. Study materials developed by the research team were assessed by the Health Research Institute’s Community Research Advisory Board and the Community Advisory Board of University of Houston, both comprising diverse community members, focused on advancing health equity among under-resourced populations to ensure relevance and cultural appropriateness. Via community health workers and patient advocates, breast cancer survivors were recruited from originally local, and later, national community-based organizations advocating for breast cancer prevention and women’s health, clinics serving minority women, and via solicitations through Black/Latina/o/x communities and church bulletin boards.

Using purposive stratified sampling a subset of 21 women were selected from the larger quantitative sample, stratified by race/ethnicity, Black (7), Latina/x (4), and White (10), falling short of the established target sample of 10 women per group. Participants included individuals self-identifying as Black, Latina/x, or White women; diagnosed with early stage (I–III) breast cancer in January 2020 or thereafter; who were receiving breast cancer care at enrollment; were ⩾18 years old, English-speaking, and had access to a smartphone, computer, or tablet to complete an internet-based survey and interview.

Data collection

Semi-structured interview guides were used to conduct online interviews, using Zoom, from April 2021 to August 2022. Two cultural anthropologists (IML; AR), both trained in qualitative research, conducted interviews lasting 50–120 minutes that were audio- and video-recorded. Research aims guided the development of the interview guide, which was refined through CRAB feedback, and in accordance with participants’ responses in the field (Patton, 2014). Questions focused on eliciting participants’ experiences, perceptions, and challenges of negotiating cancer treatment and care through the pandemic. Specifically, questions focused on women’s cancer trajectory from diagnosis to recovery—their concerns about receiving treatment for breast cancer, and specifically during COVID-19; how, and if, the pandemic impacted their motivation for seeking or continuing treatment; the process of being treated for cancer, including experiences with barriers or disruptions to care; accessing and navigating support systems; relationship and satisfaction with physicians; and overall satisfaction with care.

Data analysis

Researchers used various procedures to ensure trustworthiness of findings (Morse et al., 2002). Interviews were transcribed verbatim using a professional transcription service and uploaded onto ATLAS.ti Scientific Software Development GmbH (2021) to organize data analysis. An iterative process of data collection and inductive data analysis was used that allowed emerging findings to guide ongoing data collection and refinement of developing theoretical concepts. During initial open coding, IML and AR independently coded the first six transcripts each line-by-line, met to discuss, compare, and resolve discrepancies about emerging codes to develop an initial coding frame that remained open to revision as new data were collected and integrated into the developing analytic framework. Analysts met regularly to discuss and compare coding and agreed upon a coding frame that was reapplied to the dataset. In focused or axial coding, the relationship between codes was explored through constant comparison of codes across all transcripts, revealing patterns and links that were the basis for merging codes into categories and subcategories. Analysts engaged in memoing throughout data analysis to refine the process of developing categories and analytic concepts (Charmaz, 2014). In selective coding, developing categories were again compared across the dataset and synthesized into five categories during final theoretical coding, and a core category was identified through further abstraction. Identifying a core category is key in grounded theory analysis, as it serves as the underlying concept that integrates all other categories into a conceptual framework (Hallberg, 2006). Constant comparison of data was used to ensure fittingness and refinement of categories, avoidance of redundancy, confirmed accurate accounting of all the data and attainment of theoretical saturation (Morse et al., 2002). During the final stage of analysis, analysts consulted the research literature to develop emerging concepts and clarify theoretical descriptions.

Results

Participants’ description

Participants (Table 1) were mostly White (47.6%) and diagnosed with breast cancer in their mid-40s (mean 46.3; SD = 10.3). Most survivors were married (52.4%) and had completed college or graduate/professional degrees (38.1% respectively). Approximately 60% were employed and about half (52.6%) reported an income above 50,000 USD. While some women were uninsured when initially diagnosed, all had health insurance coverage when the interviews took place; most commonly private insurance plans (66.7%). Overall, women were diagnosed with early stage breast cancer (Stage I, 47.6%) in the year prior to their involvement in the study. Participants had received multiple types of treatment: surgery (90.5%), chemotherapy (57.1%), and hormone therapy (47.6%). Almost half indicated use of aromatase inhibitors (47.1%).

Table 1.

Sociodemographic and clinical/medical characteristics of the participants (N = 21).

Sociodemographic variables
Age at diagnosis (mean, SD)	46.3 (10.3)
	Frequency	Percentage
Race/ethnicity
Black/African American	7	33.3
Latina/x	4	19.1
White	10	47.6
Education level
High school diploma	1	4.8
Some college/associate degree	4	19.0
College degree	8	38.1
Graduate/professional degree	8	38.1
Employment status
Full-time employment	8	38.1
Part-time employment (health-related)	1	4.8
Part-time employment (not health-related)	4	19.0
On leave	2	9.5
Unemployed	4	19.0
Retired	2	9.5
Marital status
Married	11	52.4
Divorced	4	19.0
Single/never married	4	19.0
Living with someone	2	9.5
Household income
⩽$19,999	4	21.1
$20,000–$49,999	5	26.3
$50,000–$79,999	1	5.3
$80,000–$99,999	2	10.5
$100,000–$124,999	1	5.3
$125,000–$149,999	1	5.3
⩾$150,000	5	26.3
No answer	2
Private insurance (e.g. HMO, PPO)	14	66.7
Health insurance
Public insurance (e.g. Medicaid, Medicare)	5	23.8
Other	2	9.5
Medical variables
Stage
Stage 0	4	19.0
Stage I	10	47.6
Stage II	5	23.8
Stage III	2	9.5
Treatment
Surgery	19	90.5
Chemotherapy	12	57.1
Radiotherapy	6	28.6
Hormone therapy	10	47.6
Immunotherapy	3	14.3
Aromatase inhibitors	12	47.1
Time since diagnosis
<3 months	3	15.0
⩾3 to <6 months	2	10.0
⩾6 to <9 months	4	20.0
⩾9 to <12 months	5	25.0
⩾12 months	6	30.0

Categories

The core category of “negotiating cancer alone,” was the thread uniting the different aspects of women’s cancer trajectory from diagnosis to recovery across the different racial and ethnic groups, describing the commonality of women’s experiences of undergoing breast cancer treatment during COVID-19. Negotiating cancer alone was the focus of women’s experiences; they described COVID-19 isolation measures as disrupting and defining their experience of breast cancer care during the pandemic, and as exacerbating the distress they experienced in having been diagnosed with cancer. This core category describes women’s cancer trajectory as a process bounded by COVID-19 and an increased need for psychological support and comprises the following five categories; further divided into various subcategories. Pseudonyms were used in the following quotes to protect patient privacy.

Category 1: COVID-19 hardships: Initial breast cancer diagnosis and journey

Primary concern: “Get rid of the cancer.”

All women chose to prioritize treating their breast cancer rather than delaying diagnosis and care, despite expressing concerns about being immunocomprised and vulnerable to contracting COVID-19. Participants were clear and focused regarding their treatment decision-making, unanimously choosing to treat their cancer immediately so they could move forward with their lives. Even so, they acknowledged feeling that necessary COVID-19 precautions led to less supportive care, that is, lacking an “in-person touch.” A participant who was a breast cancer nurse navigator stated:

My focus was just to get rid of the cancer as fast as possible to move on. It’s crazy, but even though I know a lot about this, when you get that diagnosis, it’s almost like everything you know just goes out the window because your main focus is, “How do I get rid of this?” They were talking about maybe delaying my surgery because of COVID, but I pushed and pushed and pushed, and so I just told them I have to have this as soon as possible so they made it happen. . .I had a lot of virtual appointments, and that bothered me because I kind of felt like I wanted that in-person touch, that in-person feeling.

(Ruby, Black, age 42)

Increased psychological distress: Isolation

Participants stressed that navigating the main events of their cancer care alone—diagnosis, medical appointments, surgery, and treatment—without loved one’s support due to isolation measures was extremely difficult. For many women, this isolation was the worst part of their cancer experience:

Oh my god, it was horrible. I’ve given birth with my two children but going in for an amputation on your body completely by yourself with this genetic mutation and cancer. . . my man dropped me off outside and I got out of the car, and I literally was bawling my eyes out for everyone to see. I had to literally walk in there all by myself. Once I was in the waiting room crying my eyes out for 40 minutes before they final[ly] got in there, but once I was with the team, they couldn’t have been more caring and compassionate and loving to me. But still I was crying, crying, and crying. I cried up until the second I was put under anesthesia. Yes, I don’t think I would have been that way if someone had been with me.

(Linda, White, age 49)

Heightened mental health and supportive needs

Women related that undergoing diagnosis and treatment for breast cancer was an emotionally difficult experience that was exacerbated by being in the midst of a worldwide pandemic. Almost all participants reported relying heavily on strong emotional and spiritual support systems through their cancer trajectory. Yet, many felt mentally and emotionally strained from being treated for cancer during the isolation caused by the pandemic and needing additional psychological support to address their mental health concerns:

Things like the mental health aspect wasn’t something I really thought I needed because I have my sisters, I have my mom, I have my dad. I have my brothers and sisters and cousins and everybody checking up on me. I realized that I did need to talk to other people that have been through this because the pandemic has been so isolating. . . [everything] stopped. There was nothing. I was literally in here by myself with just my thoughts all day, every day for months and months. . . .I think that’s it, just the mental health aspect of it and the isolation. It’s something that I think pops into my head as being something that is very important throughout this–getting breast cancer during the pandemic.

(Maria, Latina, age 43)

Category 2: Provider/healthcare system alterations and disruptions

Delays in diagnosis and treatment

Given the overwhelming of healthcare systems by COVID-19, many participants experienced significant delays in treatment. Understandably, these delays contributed to additional stressors as women wanted to commence treatment immediately and felt frustrated with their lack of agency to intercede in or manage their care:

So my cancer treatment, getting it taken care of as quickly as possible because of discovering that it was most likely to become invasive and knowing that it was early, catching it as early as possible is important. So if I’d known in advance, then I would’ve maybe gone to a different facility where maybe I could have had surgery earlier. The stress of knowing all of this and not doing anything for over 3 months has really been weighing on me heavily.

(Juana, Latina, age 51)

Alterations in care

In addition to treatment delays, several participants also reported unexpected expediting or altering of treatment regimes to accommodate provider or healthcare systems COVID-19-related constraints. Participants had concerns about the efficacy, side-effects, and safety of adjusted treatments. Women reported providers notified them they were being put on expedited treatment plans, such as more aggressive and shorter chemotherapy or radiation regimens, to accommodate COVID-19:

They said I would start radiation at the end of March. I got a call that because of COVID-19 my radiation was going to be delayed until May, and they wanted me to go ahead and start taking Tamoxifen while I was waiting for radiation. . . . in April, I got a call, they wanted to start my radiation. So, they moved it up earlier. I talked to my radiologist and she said, when we are in full lockdown, that instead of doing four weeks of 15- to 20-minute sessions of radiation, she wanted to shorten it to three weeks and 25- to 30-minute sessions. So, instead of it being 20 days, it’s 15. . . . right now, [the radiated breast] isn’t healing. I jokingly refer to it as being radioactive, because it’s still fairly sore.

(Rosa, Latina, age 49)

Reclassification of “necessary” procedures

Participants also reported experiencing treatment postponement because procedures such as mastectomies to remove cancerous tumors were reclassified and considered “elective” surgeries due to COVID-19’s severe impact on hospitals. To respond to the overwhelming of the system during the pandemic, hospitals triaged patient surgeries which contributed to women’s anxieties:

Patient: I’m very lucky because also, to get an elective surgery was touch and go there for a while.

Interviewer: So the mastectomy was considered an elective surgery?

Patient: Yes. Even though I had tested positive for BRCA1. . . . . When they were scheduling it, they said it’s an elective surgery. I was like, “Yes, but I’m doing it because I’m told that the likelihood of me getting a recurrence in the breast is very high with my history.” Early onset breast cancer and then ovarian and positive for BRCA1, BRCA2. [Laughter] I consider elective surgery maybe a nose job. This is to save my life. Yes, it was considered an elective surgery. I really pushed. . . I had to be balls to the walls to do it. It was driving me crazy.

(Joan, White, age 61)

Category 3: Heightened anxiety about COVID-19 infection and treatment delays causing cancer progression

Perceptions that treatment delays caused cancer progression

Women reported being fearful treatment delays would result in their cancer advancing to the next stage or spreading to other areas of their bodies. Some participants attributed the progression of their cancer to pandemic-related treatment delays:

So it took a little bit of time to get things going as far as doctor visits and testing and whatnot. It’s either stage 2 or 3. I didn’t get a definite stage 3 diagnosis but it was in my lymph nodes by the time it was removed. It wasn’t in my lymph nodes when I was first diagnosed. It was there by the time I actually had the surgery, which was 4 months later. . . That’s what scared me was that if I knew in June and end of May when they diagnosed me, if I’ve had the surgery that week, it wouldn’t have been in my lymph nodes. It wasn’t in my lymph nodes until August. They had to pick the most urgent patients to treat.

(Keshia, Black, age 50)

COVID-19 related anxieties drove treatment decision-making

Given their lowered cancer-related immunity, women were worried about contracting COVID-19 while receiving care. Most participants felt secure with the safety precautions adopted by their providers or hospital systems. However, participants reported being anxious about undergoing more complicated and lengthy surgeries, which required protracted hospital stays, being isolated from loved ones and exposed to COVID-19, suggesting the pandemic was a crucial determinant in their treatment decision-making:

[DIEP flap] requires you stay for a week in the hospital and it’s a 12-hour surgery. . .I felt very uncomfortable too in the middle of the pandemic being in the hospital for a week and doing something like that completely by myself with a 12-hour surgery. It definitely did impact my decision to do direct implant surgery. I wish they would have told me to watch out for my mental health a few weeks leading up to surgery, absolutely. I wish they had talked a little bit more about mental health.

(Carol, White, age 41)

Category 4: Burden of additional safety measures

Supportive care limitations

Pandemic safety measures limited traditional support sources, for example, supportive care groups were suspended, caregivers were reduced to only a few, social interactions with friends and family were restricted. Being immunocompromised due to cancer meant participants were highly vulnerable to COVID-19, placing a larger burden on caregivers to be extra cautious:

Only my sister and my mom were allowed to come into the house and they had to wear face masks and so did I. Every time they left, I would have to spray down the whole house with Lysol. . . I was told COVID is deadly for me because I was going to have a compromised immune system so could get pneumonia, the common cold, but [COVID was] obviously the main driving factor behind creating the bubble and all the rules and regulations. It was very, very isolated.

(Maria, Latina, age 43)

Anxiety and inconvenience of routine testing

Participants also reported requirements to have COVID-19 tests prior to receiving any surgeries or procedures within hospitals. These tests were mandatory and needed to be scheduled to not interfere with planning surgeries. These additional tests were experienced as burdensome and increased distress, particularly as many women had various surgeries:

Well, I had to get the COVID test and then I had to go there separately because it can’t be too soon, but it can’t be too late. So, adding that extra headache was a headache. [Laughter] I’m getting this surgery, I’m already nervous. (Tamara, Black, age 49)

Category 5: Disparate experiences of disruptors to cancer care during COVID-19

While most women experienced pandemic-related disruptions in their cancer care, Black and Latina/x women reported greater delays in care, financial challenges, insurance limitations, and complications from treatments relative to White women. Many recounted experiencing all these difficulties, exacerbating their psychological distress. Use of percentages in reporting qualitative findings is generally uncommon. However, in this particular instance, the different subcategories in this category are presented below with exemplary quotes, which include percentages of the prevalence of disruptions reported by women within each racial and ethnic group to highlight health equity challenges experienced by participants.

Delays in care

While women across the different racial and ethnic groups experienced delays in care, percentages were distributed as follows: Black (N = 6, 86%), Latina/x (N = 4, 100%), and White (N = 4, 40%). One woman described her experience:

They were worried because of COVID, there weren’t slots, and I was the very squeaky wheel that knows this is really important. I need it done as soon as possible. It happened within a month and a half of me forcing their hand. . . they had told me, “Well, maybe we can get to you next March.” I had it in November.

(Joan, White)

Financial challenges

Financial challenges were particularly inequitably distributed across racial and ethnic groups: Black (N = 6, 86%), Latina/x (N = 3, 75%), and White (N = 1, 10%). Below, a participant notes how financial challenges create other difficulties:

I was worried about probably there are some costs that are not gotten by the insurance, that I was supposed to chip in. So, definitely, I was worried about finances. There was a change in the source of income because I was laid off. So, I’d say we started straining financially because I wasn’t able to provide so I was depending wholly on my partner.

(Ruby, Black)

Insurance limitations

Latina/x women experienced the greatest challenges with insurance coverage: Black (N = 4, 57%), Latina/x (N = 4, 100%), and White (N = 3, 30%). A participant expressed how fearful she felt being uninsured:

Yes, that was the scariest part; not that I was possibly diagnosed with cancer, it was that I didn’t have insurance.

(Juana, Latina)

Treatment complications

Treatment complications were not as inequitably distributed across our tri-ethnic sample as the others disruptors: Black (N = 5, 71%), Latina/x (N = 3, 75%), and White (N = 3, 30%). One woman described the added hardship of experiencing treatment complications during her cancer care:

This has been a hard journey. I’ve been hospitalized 3 times for my kidneys that were not handling the chemotherapy well. . . . I stopped talking about how close it was, because every time I got close to a potential [chemo] ending date something would always happen.

(Tamisha, Black)

Discussion

While growing evidence has documented the adverse consequences of COVID-19 on clinical and psychosocial outcomes of cancer patients (Amaniera et al., 2021; Zhang et al., 2022), few have investigated these outcomes considering the intersection between pandemic-related and pre-existing disparities. Addressing this research gap by assessing the impact of the COVID-19 pandemic, associated SDoH, and related inequities on continuity of care, and psychological well-being among a tri-ethnic sample of women is critical to inform best-practices for future models of cancer care delivery, ensure equitable care, and to improve care transitions. The present article has identified women’s key concerns to be associated with increased psychological distress given fears of cancer progression due to delays in care and heightened risk in terms of perceived vulnerability to COVID-19, alterations and disruptions to care, isolation from their primary support networks, and unattended supportive care needs across groups. However, Black and Latina/x women reported greater experiences of care disruptions and financial-related challenges than White, exacerbating their psychological distress and the pre-existing breast cancer disparities borne by these groups (Newman et al., 2021; Patel et al., 2022), confirming that SDoH are indisputable contributors to physical and psychological health (Robbins et al., 2021).

Participants reported that being diagnosed and treated for breast cancer was psychologically distressing and felt that managing care during a worldwide pandemic significantly aggravated their anxieties (Peteet, 2020). Women’s primary concern was to treat their cancer as soon as possible, at a time when delays in accessing cancer care were the norm, given the overwhelming of hospital and healthcare systems due to the pandemic. However, many survivors described being anxious that their increased exposure and vulnerability to COVID-19 exacerbated the threats and potential complications to their health, as reported by Hyland and Jim (2020). In fact, participants reported making treatment decisions based on diminishing their COVID-19 exposure, choosing shorter and less complicated procedures requiring limited hospital stays, a novel finding from this study. Women also experienced psychological distress due to provider and healthcare system delays regarding diagnosis and treatment, and reclassifications of “necessary” procedures, cited by others (Colomer-Lahiguera et al., 2021; Sokas et al., 2021). Alterations and delays in cancer care during COVID-19 have been ubiquitous and documented by numerous researchers (AACR, 2022; Carvalho et al., 2022; Riera et al., 2021; Unger, 2022). Reasons cited for care delays have included: the need to preserve personnel, personal protective equipment, and to reduce cancer patients’ risk of infection. However, in this study, healthcare personnel did not clearly communicate to participants the safety of these changes or their underlying rationale to safeguard patient health, as women simply cited patient triaging as the basis for delays. Consequently, participants reported feeling anxious that treatment delays would cause their cancer to progress. Some participants reported that, from their perspective, care delays had resulted in their cancer progressing from initial diagnosis, for example, spreading into their lymph nodes 4 months later, when they received treatment, leading to psychological distress. Healthcare systems could take preemptive measures to minimize foreseeable patients’ distress by clearly communicating care delays aimed to safeguard patient health without endangering care and outcomes, regularly screening patients for distress using readily available tools (Dekker et al., 2021), and providing patients with needed support and reassurance. Sokas et al. (2021) noted that perceived high-quality patient-physician communication was linked to increased patient coping, acceptance of altered and delayed treatment plans, and decreased negative emotions, among a predominantly White sample. Our findings concur with Sokas’ reflecting lack of high-quality patient-physician communication and increased negative emotions, possibly attributable to diverse patient characteristics. As oncology professionals are required to routinely deliver distressing news to patients, training in high-quality communication skills could facilitate these conversations including being clear, open, and empathetic in acknowledging and responding to patients’ psychological distress (Kissane et al., 2012).

Women cited isolation as a main contributor to their heightened mental health needs. While most women reported having received adequate emotional support from loved ones, many felt the need to interact with others experiencing cancer. Additionally, COVID-19 isolation measures limited wider social contact and placed additional burdens on caretakers and participants. Social networks, defined as the social relations that surround the individual (Berkman and Glass, 2000) can facilitate access to health care, information/resources, and social capital. According to the theoretical reflection of Kroenke (2018), both structural and functional characteristics of the networks influence decision-making and QoL (Holt-Lunstad et al., 2010; Wallner et al., 2017). Since networks with more connections are more efficient at exchanging information and sharing resources, those with fewer connections or less density could represent an obstacle to securing support when coping with cancer-related stress (Beasley et al., 2015). Study findings highlight the need to leverage existing social resources (i.e. family caregivers, social network members, community agencies/organizations) to contribute to patients’ well-being and outcomes. Allowing patients to be accompanied by a caregiver to hospitals, cited by some participants and others (Savard et al., 2021), could also greatly alleviate distress from isolation. As isolation measures resulted in the suspension of in-person supportive care, some participants felt the need for that in-person communication and touch. Mechanisms to better assist patients in addressing their increased mental health needs include providing resources about culturally and age-matched online cancer peer support groups, as well as online professional psychological counseling (Young et al., 2020).

The study contributes noteworthy findings on women’s disparate experiences of cancer care disruptions during COVID-19 in a diverse sample. Black and Latina/x women experienced greater delays in care, financial challenges, insurance limitations, and treatment complications compared to White counterparts. Insurance limitations were also greater among Latina/x (100%) and Black (57%) participants than White (20%), as many were underinsured or had Medicaid that did not cover certain expenses or procedures and entailed high out-of-pocket costs. Of the three racial and ethnic groups, Latina/x women experienced the greatest disruptions and disparities in care. Factors contributing to this difference include that this study was conducted in Texas, initially with local participants, and was later expanded to include national recruitment. In 2021, Texas ranked highest nationally in uninsured rates at 20.5% compared to the 10.2% national average distributed as Latino/a/x (30.1%), Black (17.5%), and White (12.5%), and with no Medicaid expansion (Figueroa et al., 2021; Texas Medical Association, 2021). Recently, Texas also ranked 51st nationally for underinsured individuals (24%) compared to the 12% national average, with 23% of Latino/a/x, 17% Black, and 12% White adults reporting foregoing care because of costs (Radley et al., 2020). Study findings show that most women who experienced one of these challenges often reported many others, as these issues are interrelated, and indicate exacerbation of well-documented racial and ethnic breast cancer disparities (Patel et al., 2022). Research documents greater treatment delays, financial instability, affordability of treatment, and insurance challenges for Black and Latina/x women during COVID-19 (Patel et al., 2022). As most women reporting these challenges are by far from minoritized communities, findings suggest that structural racism—as the totality of social structures and policies that produce and maintain inequities through the unequal distribution of resources and opportunities according to race and ethnicity (Bailey et al., 2017)—underlies these disparities. While the long-term consequences of cancer care disruptions and modifications remain to be seen, studies have predicted an additional 2500 breast cancer deaths related to COVID-19 treatment delays in the United States (Alagoz et al., 2021). A systematic review and meta-analysis of seven common cancers (breast, colon, bladder, lung, rectum, cervix, and head and neck) estimated the impact of 4-week delays across surgery, systemic treatment, and radiotherapy. Results showed delays were associated with increased mortality (p < 0.05) for 13 of 17 indications, with a mortality risk for each 4-week delay of 1.06–1.08 (e.g. breast surgery 1.08, 95% confidence interval 1.03–1.13); increased mortality was reported for longer delays (Hanna et al., 2020). Abundant research (Dalsania et al., 2022; Newman et al., 2021; Patel et al., 2022) indicates that unfortunately, the burden of these worse outcomes will be experienced by minoritized patient groups.

Study limitations include that our participants self-selected for the study, were interested in sharing their experience during COVID-19 and had some form of insurance, which may not represent breast cancer patients in general. The target sample of 10 participants from each group was not reached, which limited equitable representation. Study strengths comprise that data were collected over an extended time, capturing women’s changing experiences across different phases of the pandemic, and the racial and ethnic diversity of our sample.

Conclusions

The experience of being diagnosed with breast cancer and managing the psychosocial experience of coping with the illness and healthcare services during the pandemic had pervasive implications for women’s psychological well-being. Participants often lamented the challenge of having to negotiate cancer alone, separated from sources of support and significant others because of social distancing measures and institutional protocols. This separation from their partners, family members, and larger social networks contributed to greater psychological distress. Moreover, fear of contracting COVID-19 drove participants’ treatment decision-making. Similarly, cancer care disruptions and delays often induced worry and concern regarding disease progression, quality of care received, and overall survival. Some of our participants identified pandemic-related delays and altered protocols as the cause of their cancer progression. While these experiences were common among our participants, members of racial and ethnic minoritized groups reported substantial sources of distress, including greater delays in care, financial challenges, insurance limitations, and treatment complications. In summary, this article illustrates pandemic-related psychological, healthcare system and health equity challenges that should be considered when making recommendations for equitable and patient-centered breast cancer care.