Abstract
Racial disparities in breast cancer screening, morbidity, and mortality persist for Black women. This study examines Black women’s mammography beliefs and experiences with specific focus on barriers to mammography access in an urban city in the South East, United States. This retrospective, qualitative study used Penchansky and Thomas’ conceptualization of health care access as the framework for the data analysis. In-depth, semistructured interviews were conducted with 39 Black women. Structural and personal factors continue to create barriers to mammography among Black women. Barriers to mammography were identified for each of the Penchansky and Thomas five dimensions of access to care: accessibility, affordability, availability, accommodation, and acceptability. Clinical practice strategies to increase mammography screening in Black women must be multifactorial, patient-centered, and culturally congruent. Policy development must address the structural barriers to mammography screening through expansion of health insurance coverage and increased accessibility to health care.
Keywords: mammography, Black women, health care access, breast cancer screening, policy development
In the United States, breast cancer is the second most common cause of cancer mortality for Black women, surpassed only by lung cancer (American Cancer Society, 2019). For Black women older than 45 years of age, the incidence of breast cancer is slightly lower than their White counterparts; yet, alarmingly, breast cancer mortality is 40% higher when compared with White women (American Cancer Society, 2019). This higher mortality may be attributed to several modifiable and nonmodifiable factors including biological factors, health insurance factors, less mammography screening, other comorbidities, advanced cancer stage at diagnosis, more aggressive tumor type, differences in cancer treatment quality, and poorer response to cancer treatment (American Cancer Society, 2019; Keegan et al., 2015; Warner et al., 2015; Wheeler et al., 2013).
Black women also experience below-average survival rates related to breast cancer. Between 2008 and 2014, Black women’s overall 5-year relative survival rate for breast cancer was 81% versus 91% for White women (American Cancer Society, 2019). Reasons for the poor survival rates are that Black women often have poorer breast cancer stage-specific survival and more advanced breast cancer stage at diagnosis (American Cancer Society, 2019). The more advanced breast cancer stage at diagnosis in Black women when compared with the general population has been largely attributed to inequities in access to quality health care, including screening mammography (American Cancer Society, 2019).
Mammography screening, an effective way to identify breast cancer in early stages, is a critical element in the prevention of breast cancer inequities. In a study of 44 U.S. states, Black Medicaid-insured women in 30% of the states were significantly less likely to complete breast cancer screening (Tangka et al., 2017). The literature describes various personal, structural, and health care system barriers to mammography screening in Black women. Personal barriers include fear, anxiety, sociocultural norms/beliefs, fatalism, embarrassment, religiosity, comorbidities, mammography/breast cancer misinformation or knowledge deficits, mistrust of the health care system, and concerns about pain (Ahmed et al., 2012; C. Davis et al., 2017; T. C. Davis et al., 2012; Mangum, 2016; Reiter & Linnan, 2011; Thomas, 2004; Wells et al., 2017). Structural barriers also have a demonstrated impact on mammography uptake. These barriers include costs, lack of health insurance, time/employment constraints, lack of childcare, lack of transportation, and inadequate access to mammography (C. Davis et al., 2017; Mangum, 2016; Reiter & Linnan, 2011; Wells et al., 2017; Young et al., 2011). In addition, health care system barriers impact Black women’s mammography screening practices. These system barriers consist of factors such as inadequate or lack of health care provider discussion about breast cancer and mammography, poor patient–provider interaction and communication (prior to and during mammography screening), and navigation issues related to mammography (C. Davis et al., 2017; Mangum, 2016; Reiter & Linnan, 2011; Young et al., 2011).
To address structural barriers to breast cancer screening, The Patient Protection and Affordable Care Act (ACA) of 2010 coupled with state-level policies have provided breast screening program support and increased public and private insurance coverage for breast cancer screening (Kaiser Family Foundation, 2019). Among the privately insured, the ACA eliminated the cost sharing for preventive cancer services. In Massachusetts, this ACA policy resulted in an immediate increase in breast cancer screenings per 1,000 encounters (Steenland et al., 2019). In the states that elected to participate in Medicaid expansion, women with Medicaid are similarly afforded breast cancer screening services at no cost (Kaiser Family Foundation, 2019). Despite increases in Medicaid enrollment in states that expanded Medicaid, Behavioral Risk Factor Surveillance System data reveal small or not significant increase in rates of breast cancer screening for low-income women ages 40 to 64 in these states compared with nonexpansion states (Alharbi et al., 2019; Hendryx, 2018; Valvi et al., 2019). Furthermore, the ACA established the Prevention and Public Health Fund to support statewide, territorial, and tribal health programs to improve breast cancer detection, outreach, and education (U.S. Department of Health & Human Services, 2016). Despite these policy developments, little is known about how these policies have impacted mammography screening in Black women.
While there is evidence about barriers to mammography uptake among Black women, few have systematically assessed barriers to accessing care using a framework that accounts for the interrelatedness of domains and concepts within the measurement of access. The purpose of this article is to examine Black women’s mammography perspectives and experiences with specific foci on barriers to mammography access and associated practice and policy implications.
Conceptual Framework
Penchansky and Thomas’ (1981) conceptualization of health care access served as a framework for this qualitative study’s secondary data analysis. According to this conceptualization, health care access reflects the “fit” between health care consumers and the health care system. Penchansky and Thomas (1981) group access into five A’s: affordability, availability, accessibility, accommodation, and acceptability. According to this framework, affordability is determined by how the health care costs (e.g., charges for service, health insurance cost sharing, timing of required payment) relate to the patient’s perceived ability to pay for services. Availability considers the extent to which the health care system has the resources (e.g., adequacy of health care providers, services, and programs) to meet the patient’s needs. Accessibility refers to how easily the patient can physically access the health care system considering factors such as transportation, distance, travel time, and travel cost. Accommodation reflects the extent to which the health care system meets the patient’s needs and preferences, which may include hours of operation, telephone etiquette, and the ability to make appointments. Finally, acceptability refers to the relationship of the patient’s and health care provider’s attitudes, preferences, and characteristics related to each other (e.g., age, gender, ethnicity, years of practice, comorbid conditions) and to the health care setting (e.g., type of facility, religious affiliation). Penchansky and Thomas (1981) assert that these five domains of access form a chain that is no stronger than the weakest link. For example, providing health insurance (affordability) will not significantly improve use of health care services if the other four dimensions of access are neglected. This conceptual framework provides a broad lens from which to examine barriers to mammography uptake in Black women and allows researchers, policy makers, and practitioners to design interventions that appropriately address sociocultural factors underpinning breast cancer disparities.
Methods
This study is a secondary analysis of qualitative interview data. The primary study assessed beliefs regarding mammography screening among women visiting the emergency department (ED) for nonurgent care (Hatcher-Keller et al., 2014). Based upon previous immersion in the qualitative data, the relevance of Penchansky and Thomas’ model was noted, and thus, this theoretical model was used to frame the results of the secondary data analysis. Interview transcripts from the sample’s self-identified Black women participants were analyzed and interpreted guided by Moustakas’ (1994) procedural steps. Line-by-line coding of all transcripts was completed, and core categories of emerging evidence were determined. Significant statements were highlighted, and a codebook was developed based upon the clustering of significant statements. The themes were then categorized into overarching themes, and these themes were placed into Penchansky and Thomas’ conceptual framework based upon the relationship and linkage of the theme to the components of access. Theory triangulation was employed as authors with unique perspectives interpreted the data (Denzin & Lincoln, 2018). The research team met and discussed findings and discrepancies until consensus was reached (Denzin & Lincoln, 2018; Moustakas, 1994). This study was approved by the University of Kentucky Institutional Review Board (07-0039-X2B). All participants provided verbal informed consent.
Sample and Setting
This study’s sample is a convenience sample of 39 Black women who were interviewed after completing a survey as part of the parent study that included women of all ethnicities. The parent study explored beliefs regarding mammography screening among women visiting the ED for nonurgent care (Hatcher et al., 2010). The original study consisted of a convenience sample of 96 women between the ages of 40 and 83 years presenting to the ED of a southeastern U.S. academic medical center. The ED setting was chosen for the study because it serves a population of women being seen for nonurgent care who may have less access to preventive health services and are less likely to have a primary care provider. To identify women for the parent study, the data collector inquired at triage if potentially eligible women were present in treatment rooms and approached women seated in the waiting area and inquired if they were willing to participate in the study. The inclusion criteria were English-speaking women, aged ≥40 years who met the American Cancer Society guidelines (at the time of data collection) for screening mammography (Hatcher et al., 2010). Researchers also used snowball recruitment by mailing participants flyers with invitations to encourage friends or family to participate in the study.
Data Collection
Data were collected over a 6-month period (January to June 2010). Investigators collected demographic and health care information using a descriptive survey administered in the ED and completed in-depth interviews in participants’ homes using a semistructured interview guide (Hatcher-Keller et al., 2014). The semistructured interview guide included questions related to barriers to mammography screening such as the following: “What experiences in the health care system have influenced whether you get a mammogram or not?” “What has your experience getting a mammogram been like?” and “What are some of the reasons you might not get a mammogram this year?” Interviews were audio recorded and professionally transcribed.
Data Analysis
Interview transcripts were deidentified and assigned a unique identifying number. The transcribed interviews were reviewed, coded, and analyzed. Data analysis was guided by Moustakas’ (1994) procedural steps. First, each transcript was read several times to absorb general content. Then, line-by-line coding was completed. Subsequently, significant statements, sentences, or quotes were highlighted which provided an understanding of how the participants experienced the phenomenon. Finally, meanings were formulated from the significant statements and then organized into clusters of themes with common meanings. Following thematic analysis, themes were categorized using Penchansky and Thomas’ (1981) model of health care access.
Results
The results are displayed according to the five larger themes identified by Penchansky and Thomas with relevant quotes reflected that reinforce the subthemes that emerged in each area. This allows an emic perspective of mammography seeking behavior to be examined with the framework as a guide to elucidate the meaning. The sample included 39 Black women recruited from the ED setting (Table 1). The mean age of the women was 57 years (range 42–79 years). Less than half of the women were high school graduates (44%), and 46% had incomes of less than $30,000 annually. Applying the dimensional variables of access to care barriers to mammography in the sample population yielded categorical themes. Based on our analysis, we identified barriers to mammography for each of the five dimensions of access to care: accessibility, affordability, availability, accommodation, and acceptability (Table 2).
Table 1.
Demographic Characteristics (N = 39).
| Variable | Frequency (%) or mean (SD) |
|---|---|
| Age (in years) | 57 (±9.7) |
| Marital status | |
| Married/partnered | 16 (41%) |
| Separated/divorced | 13 (33%) |
| Widowed | 4 (10%) |
| Preferred not to answer | 6 (15%) |
| Education | |
| Less than 12th grade | 3 (8%) |
| High school graduate | 17 (44%) |
| >High school | 19 (48%) |
| Income | |
| < 10,000 | 2 (5%) |
| 10,999–19,999 | 11 (28%) |
| 20,000–29,999 | 33 (13%) |
| ≥ 30,000 | 10 (25%) |
| Don’t know | 11 (27%) |
| Mammography status | |
| Yes | 24 (61% |
| No | 8 (21%) |
| Never had one or don’t remember | 7 (18%) |
| Insurance | |
| Yes | 30 (77%) |
| No | 4 (10%) |
| Missing | 5 (13%) |
| Insurance type | |
| Private | 14 (36%) |
| Medicaid | 3 (7%) |
| Medicare | 1 (3%) |
| Missing | 21 (54%) |
Table 2.
Themes.
| Access domains | Themes |
|---|---|
| Accessibility | Location/transportation |
| Affordability | Lack of insurance |
| Cost of health care | |
| Availability | Lack of a primary care provider |
| Childcare issues | |
| Inadequate information related to mammography | |
| Accommodation | Health care providers’ failure to provide mammography information and recommendation |
| Scheduling difficulties/wait time for appointments | |
| Negative experiences within the health care system | |
| Acceptability | Skepticism/mistrust |
| Racism | |
| Pain and fear of pain from mammography | |
| Fear of mammogram results | |
| Embarrassment/breast exposure | |
| Fatalism | |
| Faith/spirituality | |
| Cultural beliefs |
Accessibility
According to Penchansky and Thomas (1981), accessibility refers to how easily a patient can physically access the health care system. Two themes emerged as important with regard to accessibility for Black women in this study. These included location and transportation. Describing a lack of geographic accessibility to mammography screenings, one participant stated:
It’d be easier for me and I would go any time you tell me [if I lived closer to my mammography provider]. But I live here, my daughter works, and if I try to get somebody to take me and they’re busy, and it’s inconvenient where they have it [mammography screening], the place it’s located.
Another participant indicated, “So they have it in the same place now, but it used to be, I’d have to go way across town for one [mammogram], but that’s the negative I see about it.” Challenges associated with location and transportation were an impediment to mammogram uptake.
Affordability
Affordability is determined by how the costs of health care relate to the patient’s ability to pay (Penchansky & Thomas, 1981). Themes identified within the affordability domain include lack of insurance and the cost of health care. These related subthemes were barriers to care that competed directly with day-to-day needs and structurally prevented women from accessing services. Some women did not have health insurance that covered the cost of obtaining a screening mammography, and some had no health insurance at all. A 51-year-old participant who had never had a mammogram stated:
The reason why I have never had one [a mammogram] – I don’t have any insurance. If I had insurance, yeah, I would get one, yeah. If I had financial assistance, I would go and get one. I mean if they help me pay for it, I would do it; but as far as me paying for it on my own, no I wouldn’t, because I can’t afford it.
One woman described her perception of the effect of cost on mammogram uptake: “You know, so a lot of people don’t go [for mammography] because they don’t have … the money to go.” Some women had insurances that were not accepted by mammography providers, and even those who had health insurance coverage often found it difficult to afford costs related to mammography. A 45-year-old insured participant said:
Well though I have health insurance, I still have the cost of the remaining balance if I haven’t met my deductible, so added more medical bills, so I really try not to go to the doctor at all or have any extra tests run … because of, to keep my medical costs down.
Availability
Availability contextualizes the extent to which the health care system has the resources or supplies to meet the patient’s needs (Penchansky & Thomas, 1981). Themes discovered related to availability were lack of a primary care provider, childcare issues, and inadequate information related to mammography. Participants without a primary care provider found it difficult to schedule mammogram appointments and obtain referrals. A 62-year-old participant who had never completed mammography stated: “I don’t have a primary doctor and if you go in with concerns like that [mammography], they always tell you to call your primary doctor, but when you don’t have one … ” Women also reported issues surrounding childcare as a barrier to mammography utilization. This prevented them from keeping appointments as scheduled and from accessing mammography services in general. A 44-year-old participant said, “I did have problems with getting somebody to watch my son while I go over there [to a mammography appointment].”
Participants also related inadequate knowledge related to mammography and suggested this impacted mammogram uptake. For example, one woman shared:
When you hear mammogram, you’re thinking needle, syringe, that type thing. Going in and taking, you know, stuff out to check it. Not knowing that it is just a machine that you’re going to be standing in front of and press down….I think a lot of times it’s not knowing …
Another 44-year-old participant who had never had a mammogram stated: “I was thinking that a mammogram was when you do the breast exam; I was. But you know nobody told me that … you have to actually be in a machine.”
Accommodation
Accommodation reflects the extent to which the health care system is organized in a manner that is acceptable to the patient (Penchansky & Thomas, 1981). Themes that emerged under the accommodation domain included scheduling difficulties/wait time for appointments, negative experiences within the health care system, and health care providers’ failure to provide mammography information and recommendation. Participants expressed difficulties in scheduling time for a mammogram because of the conflicts between work schedules and mammography office hours, not receiving adequate information regarding appointment location and time, and long wait times for appointments. A 59-year-old participant stated:
When I was working during the day, then I would have to take off and go get it done because there wasn’t anything open after 5:00 [p.m.] in order to have a mammogram … I couldn’t find time to schedule the test or to have it done
There was a pervasive and common theme of multiple negative experiences during health care encounters that made women feel mistreated and therefore less likely to complete mammography. One participant said, “I found the health department to be very embarrassing … very embarrassing, very rude.” Another 53-year-old woman described her previous mammography experience, “I don’t like it over there. They just handle your breasts like it’s a piece of raw meat.”
Health care providers’ failure to provide mammography information and recommendation was also a key theme that emerged. Several participants expressed their concerns with a lack of information and recommendations regarding mammography screening provided to them by health care providers. A 62-year-old participant who had never completed a mammogram stated: “I don’t think they ever said anything about a mammogram because at the time I was, I was going through the change [menopause] and everything; and I don’t think they had mentioned a mammogram though. They didn’t say nothing.” Similarly, another participant who had never had a mammogram said, “I’ve been up under a doctor’s care now 3 years, for 3 years under a doctor’s care, but never had they once sent me for a mammogram.”
Acceptability
Acceptability refers to the relationship of the patient’s and health care provider’s attitudes, preferences, and characteristics related to each other and to the health care setting (Penchansky & Thomas, 1981). Numerous themes derived from study data pertained to the acceptability domain. The themes identified included skepticism and mistrust, perceptions of racism, pain and fear of pain from mammography, fear of mammogram results, embarrassment/breast exposure, fatalism, faith/spirituality, and cultural beliefs. Several participants in this study expressed mistrust in the health care system. A 44-year-old participant who had never had a mammogram, indicated:
I don’t believe everything that they [health care providers] say. You know, and I tell my other sister that. You stop every time they say to do this, do this; stop doing everything they tell you to do, you don’t have to, you know.
Participants expressed feelings of being stereotyped, treated differently, or receiving poor treatment due to their race. A 59-year-old woman who had never had a mammogram described:
But sometimes the doctors don’t do it [provide mammography screening]. And sometimes it’s because of your race. They feel like well, we won’t bother with you. Just give you some medicine and send you out. I’m not trying to be funny. But in some African Americans, they do say, … you don’t look that sick, we’ll just send you on home. Wait until you get sick enough and then we’ll check it. They don’t really care even if you tell them. Sometimes prejudice, sometimes the doctors have other patients they’re trying to get to and they don’t have time.
Women also expressed that the fear of pain and previous pain with mammography were barriers to future mammography screening. One 54-year-old participant who had only completed one mammogram shared: “The [mammography] machine hurt. It was cold steel. This old steel machine, you stand up there with your breast up like that, and this thing would come down and smash your breast; that hurt.” Another 45-year-old participant who had also completed one previous mammogram described her experience:
It [mammography] was painful to me because I have small breasts and so I don’t have that much to squeeze and put on the table, so they had to keep pinching, pulling and pulling skin together to put on there [the mammography machine], so it was very uncomfortable and painful due to that. And I kept having to put my arm up and get as close to the machine as I could to try to get my breasts on there so that hurt my arm. It was uncomfortable.
Some women were embarrassed by the intimacy of the procedure, the requirement to expose their breasts during the mammogram, and the impersonal nature of the test. For example, a 45-year-old participant stated:
The only thing I really don’t care about is one thing: it’s so impersonal and them [breasts] just being just rubbed. And another thing, I’m an incest survivor, so it’s just the point of being just rubbed, someone else seeing your body.
Fear of mammogram results also played a role in dissuading women in this study from participating in mammography screening as they feared discovering they had breast cancer. A 50-year-old participant who had two previous mammograms described this phenomenon:
Well there’s a lot of time you’re scared what they’re going to say. That can scare you, too. But really you know when you already got a health problem, you almost get to [a point where], you don’t want to hear another one … I waited so long to go because I just didn’t want to hear … I’m afraid that they, I’m afraid of the word cancer and that they may find something.
Black women believed that regardless of whether they completed mammography screening or not, there were certain things that were beyond one’s control. Several participants believed that mammography would not decrease morbidity and mortality associated with breast cancer. Describing breast cancer, a 61-year-old participant indicated, “I think either you get it or either you don’t. There’s nothing you can really do; there’s nothing you can do really about anything.” Another participant who had never received a mammogram believed that “If you’re going to die from it [breast cancer], you’re going to die from it.” Yet another participant described her beliefs related to breast cancer by saying, “Just prayer…. Just leave it in the Lord’s hands. I just pray about things. I don’t see any point in worrying about something I can’t do anything about.”
Faith and spirituality also influenced participants’ decisions related to mammography screening. A 44-year-old participant who had never completed a mammogram stated:
I’m going to be honest with you. I put everything that I believe in and that I feel in the Lord. I don’t, I don’t … these doctors, I mean you know what I’m saying. I know that they know the things that they know because he’s [God] given them the knowledge; you understand what I’m saying.
Participants discussed the role that culture plays in Black women’s mammography uptake. Describing Black women and mammography, a 62-year-old participant who had two mammograms in the past said, “We just don’t; we don’t talk about things like that [mammography].” Another participant stated that “African American women, we tend to not want to go to the hospital, doctors and stuff.”
Discussion
Black women continue to experience disproportionate mortality from breast cancer compared with the majority population in the United States. Rates of mammography and access lag behind other populations, and this has been identified as one of the contributing factors to this continued health disparity (Jemal et al., 2018). Unique personal, structural, and health care system factors are barriers to mammography screening among Black women. This analysis presented an opportunity for contextualization of those unique barriers using the lens of Penchansky and Thomas’ five domains of access. Important findings emerged that elucidate these barriers and permit deeper exploration of ways to promote mammography in this underserved population.
This study underpins our increasing understanding that health equity is complex and that access to mammography should be considered broader than merely insurance coverage or access to a physical mammography suite. It allows a look at how system issues, cultural issues, and structural issues are intricately connected and how this combination impacts the utilization of care. Despite changes to health care policy that provide more expansive access to insurance, women of color continue to experience inequitable health outcomes. For example, health care reform through the ACA played a pivotal role in reducing financial impediments to accessing mammography (Fazeli Dehkordy et al., 2019; Trivedi et al., 2018); yet, barriers to mammography persist. Despite interventions such as mobile mammography vans that bring physical access to communities (Stanley et al., 2017), Black women continue to lag behind in mammography screening. Multiple factors contribute to this disparity, and this analysis provides a deeper look at those factors and their synergistic effects. There is an interaction between the five factors that the framework identified and the reality of the women in the study. This article provides key information about barriers to mammography that may lead not only to a deeper understanding of this disparity but, more importantly, enhance our ability to more precisely tailor interventions to increase the mammography utilization for Black women and impact breast cancer mortality rates.
Limitations
In addition to the potential limitations inherent in qualitative research such as researcher biases or influence (Denzin & Lincoln, 2018), the convenience sampling and recruitment of all participants from one southeastern state ED, while providing a framework for future studies and a foundation from which to begin developing tailored interventions, limits the transferability of the findings to other women.
Policy Implications
The structural barriers of cost, lack of health insurance, and limitations in health insurance coverage of mammography screening represented the pertinent themes within the affordability domain of access in this study. Since this study’s data collection, the ACA eliminated out-of-pocket costs for many individuals for recommended screening services, including mammography screening (American Cancer Society, 2017a). Studies published in 2017 and 2018 found a post-ACA increase in mammography uptake in Medicare patients (65+ years old) (Cooper et al., 2017; Trivedi et al., 2018), but there has not been increased uptake of mammography in commercially insured women (Carlos et al., 2019). In contrast with private insurance coverage, Medicaid coverage increased to 22.1% in 2016 from 17.2% in 2011 in states with Medicaid expansion for people aged older than 18 years. Further improvements in mammograms for low-income women on Medicaid were greater in states where Medicaid legislation was passed (Toyoda et al., 2020). These statistics indicate that even after increased health insurance coverage in the United States as a result of the ACA, other factors continue to serve as barriers to mammography screening.
While national and state public policies have largely alleviated cost-related structural barriers to accessing mammography screening for those with health insurance coverage, the uninsured continue to remain at risk of delaying screening for breast cancer (Chowdhury et al., 2016). In 2015, only 30% of uninsured women aged 40 to 64 years had a mammogram in the past 2 years, compared with 68% among the insured (American Cancer Society, 2017b). A cohort study between 2012 and 2016 showed that Black patients and patients younger than 50 years had a decreased incidence of advanced-stage breast cancer from 24.6% to 21.6% in states that expanded Medicaid (Le Blanc et al., 2020). As of March 2019, 14 states had not expanded their Medicaid programs, and in 2019, the individual mandate for health insurance no longer is associated with a tax penalty for those who do not have health insurance. This points to a clear need for policy makers to continue to support policies and initiatives aimed at expanding local programs dedicated to increasing awareness of the risks for breast cancer, improving availability of mammography services in underserved communities, as well as increasing access to affordable preventative breast cancer services. While the ACA is not a panacea as pointed out by this analysis, it provided provisions that increased mammography access. Potential rollback in federal and state health care policies, such as the elimination of universal insurance, threatens to undermine improvements that have been made by the ACA in terms of reducing/eliminating structural barriers to mammography screening.
Since 1990, federally funded programs have addressed a number of the factors Black women identified as barriers to mammography utilization. These include the federally funded Centers for Disease Control’s National Breast and Cervical Cancer Early Detection Program (NBCCEDP) and the National Comprehensive Cancer Control Program with strategic initiatives and priorities administered by state health departments (Centers for Disease Control and Prevention, 2017), which offer free or low-cost screening mammography for women. Of approximately 13.7% of Black women eligible for the NBCCEDP, 17.6% (n = 90,976) were screened via the NBCCEDP (Howard et al., 2015), and in 2017, 191,984 women received NBCCEDP-funded mammograms (Faguy, 2020). Given the strong emphasis expressed by the women surrounding knowledge and recommendations for mammography, it is critical that programs that support breast cancer and mammography education and breast cancer screening access continue to be provided. Public policies that contribute to the continued funding of the NBCCEDP and the National Comprehensive Cancer Control Program may have a direct impact on the provision of breast cancer education and mammogram uptake for lower income Black women. These programs provide appropriate referrals and follow-up services for medical treatment of women screened and disseminate public information and education for the detection and control of breast and cervical cancer (Lee et al., 2014).
Eliminating structural barriers via state and federal public policies that expand access to health insurance coverage and health care is imperative to improving mammography screening uptake among Black women. Therefore, advocating for such policies in a coalesced effort is essential, as is increasing focus on developing precise and culturally tailored interventions to address other barriers to screening mammography access for Black women. Sustainable community outreach activities, such as mobile mammography, have proven to help reduce these structural barriers for Black women while offering a possible solution to bolstering breast cancer screening in underserved communities residing in urban and rural settings (Faguy, 2020). Community-based breast cancer support agencies that include patient navigators, breast cancer support groups, and early detection programs also play a pivotal role in maximizing breast cancer outcomes in Black women (White-Means et al., 2020). Other barriers such as having inadequate childcare and having to pay for childcare have been associated with a lack of breast cancer screening (Balas et al., 2020). Although research is limited on addressing childcare as a screening barrier, one study of the Canadian-based Nanny Angel Network, a free childcare charitable organization for mothers with cancer, showed that women with cancer are more likely to use these services if available (Cohen et al., 2017). Programs like the Nanny Angel Network offer potential models that can be explored and tailored to communities in the United States.
Practice Implications
Although costs, lack of health insurance, and limitations in health insurance coverage of mammography screening represented pertinent themes under the affordability domain of access in this study, other reoccurring themes related to individual and societal barriers emerged under the acceptability domain. Historic physiological and psychological negative experiences associated with mammography and the fear of such experiences can be significant deterrents to mammography uptake. As in previous research, Black women in this study referred to skepticism and mistrust in the health care system, experiences of racism, fear, pain, embarrassment, fatalistic views, faith and spirituality, as well as cultural beliefs as factors affecting their decisions to complete mammography screening. Thus, approaches to increase mammography screening in Black women must continue to include a focus on the individual patient’s needs and values to improve health outcomes (Nekhlyudov & Braddock, 2009; Rathert et al., 2013).
Our findings support the need for culturally tailored care that includes consideration of factors beyond those that are structural. Patient navigation programs using peer navigators that connect Black women to health care resources and consider specific cultural beliefs and historical discrimination are necessary (Kim et al., 2018). These programs continue to be refined and included as evidence-based ways to augment care for vulnerable populations. In addition, navigation can connect women to needed screening services through affordable health care services such as Federally Qualified Health Centers (FQHCs) and thereby increase routine health care visits and mammography screening in this underserved population (Best et al., 2017). FQHCs are a subset of nonprofit safety net clinics that provide comprehensive primary health care and supportive services in medically underserved areas (Nocon et al., 2016). The inclusion of culturally sensitive navigators in FQHCs demonstrates responsiveness to the complex picture that emerges regarding access that includes both structural and cultural barriers.
The Black women in this study identified patient–provider communication and support as factors that could enhance the health care experience and result in a more trusting patient–provider relationship. Based on historical insults, Black women are more likely to distrust the health care system, and this distrust has been linked to decreased reporting of mammography barriers. Not reporting mammography barriers is associated with a lower likelihood of screening mammography completion (Kim et al., 2018). Thus, there must be efforts by the health care system to improve collaborative health care decision making through the use of appropriate evidence-based decision aid tools and training of health care providers to help patients to effectively use these tools (Stacey et al., 2017). In an inundated health care system, it is understandable that implementing these methods may be challenging for already taxed health care providers. The use of other members of the health care team such as community health workers and patient navigators has shown to be effective in supporting health care decision making and improving mammography rates, particularly among low-income, minority populations (Kim et al., 2018; Phillips et al., 2011). Strategies to increase screening mammography in Black women must be multifactorial and use culturally congruent care (Alexandraki & Mooradian, 2010; Copeland et al., 2018; Falk et al., 2018; Kim et al., 2018).
Recommendation of mammography by a health care provider remains the best facilitator of mammogram uptake for all ethnicities. A trusting relationship with a health care provider and knowledge of the mammogram procedure and its risks and benefits have also been shown to increase uptake of screening mammography in minority women (Alexandraki & Mooradian, 2010). Research shows that interventions that increase Black women’s mammography uptake include community health workers (Copeland et al., 2018; Fouad et al., 2010; Hatcher et al., 2016; Russell et al., 2010), phone and multimedia interventions (Copeland et al., 2018; Gathirua-Mwangi et al., 2016; Russell et al., 2010), text messaging, smart phone applications (Coughlin, 2014), media targeting Black audiences (Wallington et al., 2018), and Black community engagement (Copeland et al., 2018; Coughlin, 2014; Falk et al., 2018; Leeks et al., 2012). Patient-centered care, compassionate care that is responsive to the needs and values of the individual patient, has been shown to be effective in improving health outcomes and breast cancer treatment adherence and is an essential component of any strategy aimed at increasing mammography uptake in Black women (Rathert et al., 2013). Health care providers must facilitate open communication with Black patients and use strategies that are targeted specifically for Black women to improve the disproportionate mammogram screening and breast cancer morbidity for this population. Strategies that include the promotion of breast cancer detection practices, such as breast self-examination, was associated with the likelihood of having an annual clinical breast examination and annual mammography in Black women (C. M. Davis, 2020). Further, addressing health care systemic racism and perceived differential treatment based on race experienced by Black women may alleviate the distrust in providers, facilitate open communication, and promote preventive care (Henderson et al., 2020). Health care providers and the health care system rarely acknowledge their role in the development and persistence of health disparities, rather focusing on responding to them. However, implicit bias is inherently internal and must be addressed with approaches that recognize health equity requires intervening both in the social and delivery systems that allow inequity to thrive (Agrawal & Enekwechi, 2020). Training for all health care providers in implicit bias and structural humility is necessary for the mobilization of appropriate resources in social, community, and clinical settings that improve Black women’s access to mammography and break down the societal and health care system barriers to equitable breast cancer screening for this population (Bourgois et al., 2017).
Conclusion
Findings from this study and available literature demonstrate the unique experiences of Black women when accessing health care, especially in terms of cancer preventative services such as screening mammography. The findings from this analysis demonstrate the common and often intertwined themes that emerge in the perspectives of Black women regarding screening mammography uptake. The findings provided here clearly demonstrate the need for multilevel, multicomponent, evidence-based interventions that are tailored to the cultural needs of the participants. These interventions necessarily should include education for health care providers regarding cultural sensitivity, structural humility, and implicit bias and may include navigation and community-level education regarding current clinical recommendations. Broad, evidence-based interventions are essential at the clinic, community, and health care system as well as local, state, and national policy levels. The intersectionality of these elements establishes that access to care encompasses more than just health insurance coverage, and these multiple dimensions of access must be considered when considering cancer control and prevention policy and in health care practices that include Black women.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Cancer Institute (grant number K01CA133138) and by the University of Kentucky College of Nursing DREAM Center.
Author Biographies
Dr. Aleshire’s research interests focus on health promotion, cancer prevention/screening, and healthcare access for vulnerable populations. Her program of research aims to promote health and healthcare for lesbian, gay, bisexual, transgender, queer/questioning (LGBTQ*) individuals; Black women; and women with increased risk for colorectal, breast, and HPV-associated cancers. Dr. Aleshire is passionate about fostering equity, diversity, and inclusion not only at the University of Louisville, but also in the greater Louisville community and state of Kentucky.
Dr. Adebola Adegboyega received a BSN and PhD in Nursing from the University of Kentucky. She is currently an Assistant Professor at the University of Kentucky, College of Nursing. Dr. Adegboyega’s research focuses on health promotion, disease prevention, and reducing health disparities among underserved and minority populations.
Dr. Escontrías holds a Doctorate in Public Health Policy and Management (DrPH) and a Master of Public Health (MPH) in epidemiology from the Mel and Enid Zuckerman College of Public Health (MEZCOPH) at the University of Arizona. He possesses strong analytical and critical skills as an accomplished public health official and policy advisor. Dr. Escontr ıas has close to 15 years of public health expertise in the areas of community engagement and coalition building, health policy, and evidence-based research related to chronic and infectious diseases. Additionally, his expertise in quantitative methods allows him to provide guidance and mentorship in the areas of research methods, epidemiology, project management, and public health policy. Dr. Escontrías is dedicated to maximizing access to health care to the vulnerable populations of Arizona by addressing social and political policies that impede optimal health.
Jean Edward PhD, RN, is an Assistant Professor at the College of Nursing and Nurse Scientist for UK HealthCare’s Markey Cancer Center. Her program of research is focused on promoting equity in healthcare access, affordability and health outcomes for underserved communities by intervening on the social determinants of health. She utilizes community-based, mixed methods and interdisciplinary approaches to develop interventions to promote equity in access to and affordability of care. Her research has been disseminated in over 25 peer-reviewed publications and presented at over 50 national, regional and local conferences.
Dr. Jennifer Hatcher has a sustained program of research focused on improving the health of underserved minorities, with a focus on cancer disparities. In 2018 Dr. Hatcher joined the University of Arizona Cancer Center and Mel and Enid Zuckerman College of Public Health as a full professor and associate director of community outreach and engagement.
Footnotes
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
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