Regular Mammography Screening Among African American (AA) Women: Qualitative Application of the PEN-3 Framework

Abstract

Introduction:

Breast cancer mortality rates among African American (AA) women are at 29.2 deaths per 100,000 persons compared with 20.6 deaths per 100,000 persons among Caucasian women. Regular mammography screening may significantly reduce breast cancer mortality and narrow this disparity. This study guided by PEN-3 model aims to explore the relationships and expectations domain and identify perceptions, enablers, and nurturers of regular mammography among AA women.

Method:

As part of an intervention study, in-depth interviews were conducted with 39 AA women recruited from the emergency department of a public university hospital.

Results:

Women’s perceptions included fear and limited knowledge. Enablers identified were cost, socioeconomic, and race-related discrimination, and health care previous experiences. Nurturers identified included observation of family experiences and lack of health-related social support.

Discussion:

Findings underscore the need to develop culturally tailored interventions to address the issues salient to this population.

Breast cancer is the second most common cause of cancer death among African American (AA) women, surpassed only by lung cancer (American Cancer Society, 2018). In 2018, it is estimated that there will be 266,120 new cases of female breast cancer and an estimated 40,920 people will die as a result of breast cancer (American Cancer Society, 2018). Though the incidence rates of breast cancer are lower among AA women (125.1 per 100,000 compared with 127.7 per 100,000 among Caucasian women), the breast cancer mortality rates among AA women are higher (29.2 deaths per 100,000 persons compared with 20.6 deaths per 100,000 persons among Caucasian women (National Cancer Institute, 2017). Nationally, AA women had a 42% higher breast cancer mortality between 2008 and 2012 compared with White women (American Cancer Society, 2017). This mortality difference likely reflects a combination of factors, including differences in incidence rates, progression of cancer at diagnosis, tumor characteristics, obesity, and other comorbidities, as well as access, adherence, and response to state-of-the-art treatments and prevention recommendations (Curtis, Quale, Haggstrom, & Smith-Bindman, 2008; Daly & Olopade, 2015; DeSantis et al., 2016; Ooi, Martinez, & Li, 2011).

In part, the disparate breast cancer mortality rate suffered by AA women can be attributed to irregular mammography screening patterns which result in later stage of diagnosis and poorer stage-specific survival (DeSantis et al., 2016). Additionally, screening frequency and longer time periods between screenings may also contribute to this disparity. Mammography accounts for the greatest contribution to early detection and decrease in breast cancer mortality, although its use has resulted in a minor increase in the number of in situ cancers detected (Nagwa, 2016). Regular mammography significantly reduces breast cancer mortality and may narrow this disparity.

An integrative review by Jones, Katapodi, and Lockhart (2015) found that family history and younger age were positively associated with mammography screening. The lack of health insurance coverage, underinsurance, cost, lack of access to regular health care, poor knowledge of breast cancer, and risks were barriers to mammography screening. Other obstacles to mammography completion include not remembering to schedule screenings, transportation issues, difficulty getting time off work, fear, fatalism, and past negative health care experiences (Patel et al., 2014).

To avoid broad categorization and ignore heterogeneity by using broad “Black” grouping (Consedine, Tuck, Ragin, & Spencer, 2015), this study focused on women who self-identified as AA women. AA describes people of African ancestral origin who self-identify or are identified by others as AA and have resided in the United States for several 100 years and have subsequently developed unique cultural traditions (Commodore-Mensah, Himmelfarb, Agyemang, & Sumner, 2015). Given the unique cultural considerations for AA women and the disparate breast cancer mortality experienced by the group, it is important that we consider specific factors that might affect the decision to obtain regular mammograms.

Theoretical Framework: The PEN-3 model

PEN-3 is a framework that might provide important insight into the screening behaviors of AA women. The PEN-3 model (Figure 1) was developed to situate the concept of culture at the center of the determinants of health behavior in health promotion and disease prevention interventions (Airhihenbuwa, 1992). The PEN-3 framework is designed to be a building block for incorporating cultural values and practices of specific populations into intervention development and program planning. The framework has been successfully utilized to develop interventions integrating culturally relevant factors to affect cancer screening, treatment, and follow up (Erwin et al., 2010; Ochs-Balcom, Rodriguez, & Erwin, 2011) The three dimensions of the PEN-3 framework are dynamically interrelated and interdependent (Airhihenbuwa, 2006).

Figure 1.

PEN-3 model (Iwelunmor, Newsome, & Airhihenbuwa, 2014).

The purpose of this study is to explore the relationship and expectations domain of the PEN-3 model and identify perceptions, enablers, and nurturers of regular mammography. The research questions addressed by this research study were as follows: (a) What are the perceptions that may influence regular mammogram screening decisions among AA women? and (b) What are the enablers and nurturers that contribute to regular mammography among AA women?

Method

Design

This is a qualitative study using phenomenology. Participants took part in private interviews using a semistructured interview guide with open-ended questions.

Setting/Sample

Participants were recruited from the emergency department (ED) of a public University hospital in an urban setting in a southeastern state and scheduled for interview later. The sample included AA women who presented to the ED of a University hospital with nonurgent complaints or accompanied someone presenting to the ED with nonurgent complaints. Recruitment in the ED allowed enrollment of women who use the ED as their primary source of health care, and therefore be less likely to have access to a regular source of health care. Eligibility criteria included being (a) English speaking and (b) aged 40+ years, thus meeting the age eligibility guidelines for mammography according to the American Cancer Society (2015) that women aged 40 to 44 years should have the choice to start annual breast cancer screening with mammograms if they wish to do so.

Procedures

Individual interviews were conducted over an 18-month period from June 2014 to December 2015. This qualitative study was part of a larger intervention study conducted in the ED of a public university hospital (Hatcher, Rayens, & Schoenberg, 2010). Both the transtheoretical model and the health belief model were used as an organizing framework for the intervention study. Although women of all ethnicities were invited to participate in the larger study, after the survey completion in the ED, the principal investigator or a trained research assistant contacted AA participants by phone and scheduled a time for an interview to explore their unique perspectives.

Data Collection

This study was approved by the university institutional review board. Sociodemographic information and in-depth individual interviews from 39 AA women were collected with semistructured interview guide until data saturation. The initial interview guide is shown in Table 1. Interviews were designed to elicit AA women’s salient beliefs regarding regular mammography. Each interview took approximately 1 to 1.5 hours and was audio recorded with the women’s permission for later data analysis.

Table 1.

Initial Interview Guide.

Questions	Probes
What experiences in the health care system have influenced whether you get a mammogram?	What type of facility did you use? How long did you wait?
What has your experience getting a mammogram been like?	Painful? Embarrassing? Pleasant?
What are some of the reasons you might not get a mammogram this year?	Transportation? Child care issues? Money? Competing demands?
Why did you get a mammogram in the past?	Family? Religious reasons? Provider?
Talk about some of the reasons women should or should not get regular mammograms?	Neglect? Minimize personal health needs while emphasizing needs of family members?
Talk about how getting a mammogram will affect your everyday life now or in the future?	Peace of mind? Role modeling for female relatives? Time commitments?

Data Analysis

All interviews were transcribed verbatim and the transcripts were imported into NVivo for organization and analysis. The interviews were analyzed using the principles of content analysis (Morse & Field, 1995). The first stage of the analysis consisted of word by word transcripts reading to derive line by line codes by highlighting the exact words that capture key thoughts or concepts related to regular mammography rather than using apriori codes based on preestablished template of the PEN-3. Textual summaries were developed from reading and labels directly from the texts formed codes reflective of more than one key thoughts emerged. Related codes were sorted into categories (Hsieh & Shannon, 2005; Morse & Field, 1995). The coded data were grouped according to the PEN-3 framework domains of perceptions, enablers, and nurturers (Iwelunmor et al., 2014).

Several steps were taken to insure the rigor and trustworthiness of the data (Lincoln & Guba, 1985). First, data collection continued until saturation was reached and no new ideas emerged from participants. Second, the research team had prolonged immersion and engagement with the data. Third, researchers read the transcripts and analyzed the data to assure trustworthiness. After 5 to 7 transcripts, researchers reached consensus agreement and coded the transcripts independently. Code books including quotes were created and stored in NVivo. During research meetings, codes and their meanings were categorized and discussed. Finally, researchers conducted member checking with selected participants to ensure accurate data interpretation.

Results

Sociodemographic characteristics of participants are shown in Table 2. Themes consistent with the relationships and expectations domain (perceptions, enablers, and nurturers) are discussed.

Table 2.

Demographic Characteristics (N = 39).

Variable	Frequency (%)
Age, M (SD)	57 (±9.7)
Marital status
Married/partnered	16 (41)
Separated/divorced/widowed	17 (43)
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)
10,999–29,999	16 (41)
⩾30,000	11 (28)
Do not know	10 (26)
Mammography status
Yes	24 (61)
No	8 (21)
Never had one or do not remember	7 (18)

Perceptions

Perceptions, as defined by the PEN-3, for this study include individually held knowledge, attitudes, values, or beliefs stated by participants that facilitate or hinder personal motivation and decision making to maintain or change mammography practices. Themes related to perceptions are discussed below.

Fear of Pain Associated With Mammography Screening.

Women reported fear and concerns about the pain associated with mammography. The perception of pain was a significant barrier to mammography. While some women perceived the mammography procedure as uncomfortable, others perceived that it was outright painful. The fear of this pain for many of the women who have been previously screened stemmed from their own prior experiences. For the never screened women, the fear was based on information from women in their social and family circle who had undergone mammography screening. For example, a participant said,

I really have this fear because the ones I had were painful. I have big breasts and it was painful. It’s the pressure of when they put machine down on your breast that they tighten; it’s so tight. And I have big breasts and it was not only uncomfortable, it was pain. The pain of mashing down on your breast.

Another participant corroborated this fear, “I was more afraid of taking one because I had heard everybody was like, oh it’s going to hurt, it’s going to hurt, and I don’t like pain.” Another woman also expressed, “It hurts; they smash you. It was worse so I didn’t go back.”

Many women reported that they found mammography screening uncomfortable and others described the procedure as painful. While others described that they were inadequately informed or prepared for what to expect during the procedure.

Fear of Results and the Unknown.

This fear created anxiety for women and seemed to be based on the fear of a breast cancer diagnosis and the health consequences of breast cancer. Women discussed fear of the unknown related to the mammography procedure. For instance, one woman stated, “I’m petrified, just because I don’t feel it doesn’t mean there’s nothing there. I think there’s always apprehension, even though you know you’re okay. But there’s still that two percent of doubt.” Some women were concerned about being exposed to radiation during the procedure and feared that mammogram radiation might cause cancer.

Several women discussed their lack of trust in health care providers and the health care system in general. For example, one woman said, “it’s just some people just don’t believe in doctors, don’t want nobody to touch them or they’re scared to even know, they just don’t want to know if they’ve got anything . . . ” Another participant emphasized her distrust, “I don’t think that the mammogram results are reliable; I think it depends on who’s reading the mammograms.”

Additionally, women who already had other health problems were concerned about receiving a cancer diagnosis and how cancer would affect their lives and survival. For example, one woman stated, “ . . . just let me die of whatever I’ve got, I don’t want to know another one.”

Fatalistic Beliefs.

AA women held fatalistic beliefs about breast cancer, related to the lack of control over whether one gets breast cancer. Some women expressed that breast cancer cannot be prevented, no matter what is done to prevent it. For instance, one woman stated, “ . . . to me it’s like a germ that if it gets in your body or it’s in there hibernating, then it’ll come out, if it wants to, no control over it whatsoever.” Another participant noted, “cancer screening doesn’t change anything, if you’re going to die from it, you’re going to die from it.”

Limited Knowledge of Mammography Screening.

Limited knowledge was a significant barrier to mammography for women who had not been screened. Some women could not differentiate between breast self-examination and mammography. For example, a woman stated,

I was thinking that a mammogram was when you do the breast exam . . . I said, I’ve been doing those (mammography) at home myself. She was like; you can’t do it at home. Well yeah, I have been. She’s like, no, you can’t do a mammogram at home. I said, okay then maybe you’d better tell me, if I’m doing something wrong. She said, first you have to have a machine and I’m sure you don’t have this machine at home.

This statement from another participant also showed limited knowledge, “when you said mammogram, I am thinking needle and syringe, you know that type thing, to check it. Not knowing that it is just a machine that you’re going to be standing in front of and press down.” Women who had been screened in the past 2 years had more knowledge of mammography, knew what to expect and discussed benefits such as reassurance and maintenance of good health.

Lack of Personal Risk.

Lack of personal risk for breast cancer was common among women who had never screened. As expected, women with breast cancer family history expressed heightened personal breast cancer risk. One woman stated, “I’m scared because my mom had breast cancer. It scares me because I know I’m older and Black; if she had it, maybe I can catch it too.”

Enablers

Enablers of screening are societal, systematic, or structural influences that may enhance or create barriers to maintain or change health/illness beliefs and practices. Themes related to regular mammography screening enablers are discussed below.

Cost.

In this group of women, cost was a barrier to screening. Women without health insurance anticipated high cost of screening, while individuals with health insurance discussed the copayment that they may incur. Previously screened women were more likely to have a source of insurance, but all women discussed financial burden associated with screening. One woman stated, “ . . . if they help me pay for it, I would do it but as far as me paying for it, I can’t afford it.” Another participant explained,

. . . well though I have health insurance, I still have the cost of the remaining balance if I haven’t met my deductible, so, I really try not to go to the doctor at all or have any extra tests run, to keep my medical costs down.

Access.

Screening was enabled by access to a primary care provider and by a provider’s recommendation for mammography. Participants cited that they have had mammography based on their provider recommendation and referral. However, in some cases, participants were discouraged from scheduling a screening due to long wait experienced during a previous visit and nonflexibility of appointment times. Some participants reiterated that their work schedules make it difficult to attend screening. For example, one woman stated, “ . . . employers don’t allow time off . . . its difficult getting a mammogram because they only schedule them during working hours.”

Socioeconomic and Race-Related Discrimination.

Women expressed hesitation about using mobile mammography clinic due to perceived discrimination. The women explained that equipment in mobile clinics are substandard. Participants expressed that their ability to pay for mammogram through health insurance influenced the way they perceived that they were treated and the quality of care they received. One woman stated, “ . . . I think that people in that professions just like other professions, often do not respect people who are socioeconomically deprived . . . ” Another woman noted, “we know that the new equipment goes to the higher paying areas and the older equipment comes to the lower paying areas of the community.”

Previous Negative Health Care Experiences.

Women who have had unpleasant experiences with health care projected that they will have similar experience for mammography. This inference discouraged several women from screening initiation. For others, it was a combination of negative stories of mammography from their trusted sources and allies coupled with their personal experience that prevented them from regular screening. Previously screened and unscreened women emphasized that their experiences within the health care influenced screening decisions.

Participants’ discussions showed that gender and attitudes of mammogram personnel played an important role in mammography experience and regular screening. Several women preferred female mammogram personnel for privacy. One woman emphasized, “I’d prefer it to be a woman; I wouldn’t want a man, if it is only men in there, then no.”

Women who reported poor interpersonal interaction and rude behavior from personnel were less likely to have regular mammography. One woman stated,

I found the health department to be very embarrassing, very rude, discouraged me from going at all. I don’t like it over there. They just rough handle your breasts like it’s a piece of raw meat . . .

Nurturers

Nurturers are supportive and/or discouraging influences that a person may receive from significant others. Nurturers identified are discussed below.

Observation of Family Members’/Significant Others’ Experiences.

Several women reported that observing family members’ experience with cancer affected their screening decision. For instance, participants with family history began screening earlier than the recommended guidelines. One woman shared her experience, “I started getting one at 35, I knew I needed mammogram because my mother was getting them . . . ” Another woman stated, “I had my first mammogram when I saw a patient who had her breasts eaten away because she had not been treated . . . ”

Lack of Health-Related Social Support.

A central theme that emerged during interviews was the lack of health-related social support. Most women discussed that AA women do not discuss issues related to health screening with one another. Some participants discussed that they are not encouraged to have a mammogram by women within their social network, closely tied to this are the shared mammography experiences within participants’ social network. One woman stated, “ . . . I don’t know, us as AA women, we don’t pretty much discuss that (screening) with one another. We just don’t; we don’t talk about things like that.” Another woman stated, “ . . . people scare you when they tell you about theirs. That has kept me from going . . . ”

Participants responses about feedback received from their friends and families about mammography experiences varied. Women who receive encouraging feedback about mammography from their social network are more likely to have been screened. One woman stated, “my friend told me that she had one and encouraged me to go get screened.”

Discussion

This study explored factors that influence regular mammography screening practices of AA women using the PEN-3 framework as a theoretical underpinning. Understanding these factors may be instrumental in developing appropriate interventions to encourage AA women to participate in regular mammography thereby affecting their breast cancer disparate mortality rate. There were critical findings that might impact future interventions for mammography screening for this population.

First, fear appears to be a persistent and powerful barrier to regular mammography. This fear is expressed on several levels and relates to various aspects of the screening process. This negative perception is one that must be a central part of any intervention designed to improve screening practices in AA women. The fear of physical pain related to mammography was commonly expressed. A substantial proportion of women experience some level of pain or discomfort during mammography (Papas & Klassen, 2005; Whelehan, Evans, Wells, & MacGillivray, 2013). Consistent with our findings, existing literature on mammogram screening has documented mammogram-related pain among minority women as a barrier to mammogram use (Fayanju, Kraenzle, Drake, Oka, & Goodman, 2014; Mayfield-Johnson, Fastring, Fortune, & White-Johnson, 2016; Schueler, Chu, & Smith-Bindman, 2008). Future research should further explore the underlying factor producing pain during mammogram among AA women.

Perception of pain was a concern for women who had experienced discomfort in previous screening experience. This perception tends to prevent women from scheduling regular mammogram. Women who had not been previously screened reported anticipation of pain which may have stemmed from other women’s experiences. A woman’s experience influences how she describes it to her friends and family, and this will influence their screening attendance as well (Van Goethem et al., 2003). Mammography pain is a combination of different factors including biological factors (breast tenderness or thickness); psychological factors (pain expectation, previous painful mammogram, and anxiety level); and staff-related factors (attitudes, communication problems, provider’s roughness, and no opportunity to ask questions (Davey, 2007).

Women experience less pain when they feel that they have control over the pain stimuli and if they can ask the provider to stop the procedure if it becomes too painful (Van Goethem et al., 2003). Providers should be more compassionate, attentive, and make efforts to enhance the mammogram experience and overall interaction. Another way to alleviate pain is to put women at their ease and explain the procedure beforehand to reduce anxiety especially for first time mammography attendees (Davey, 2007; Van Goethem et al., 2003). Women should be informed that they may experience some discomfort but be reassured that it is common. Women should be educated that to have a high-quality mammography image, compression, and good positioning are mandatory, but could cause pain and discomfort to the patient (Van Goethem et al., 2003).

It appears that to mitigate the fear of the unknown and pain, elucidation of the screening process should be an integral part of the intervention design, including pictures of the machines, positive testimonies, and other intervention elements to demonstrate the benign nature of mammography procedure. Interventionist should consider an individual’s expectations during mammography and provide reassurance to help allay fear regarding the procedure. This type of information has demonstrably decreased the severity of perceived pain during mammography (Fernández-Feito et al., 2015; Papas & Klassen, 2005).

To address the fear of the unknown, AA women should be provided patient education to help them understand their mammography results, required follow ups, and treatment plans if indicated. In addition, lay health workers (LHWs) who have experienced mammography may help provide a positive counterbalance for the fear. LHWs positive stories of mammograms can begin to modify beliefs and attitudes about breast cancer screening (Peek, Sayad, & Markwardt, 2008) and its consequences. Both screened and unscreened women experienced the fear of unknown, but screened women used it as a motivator. Tapping in to this motivation with the use of screened LHWs may be an opportunity for intervention development.

Another important finding from this study was related to access to care. Access is a complex concept that involves several factors. The extent to which persons “have access” to services depends on financial, organizational, and social or cultural barriers that limit utilization of services (Gulliford et al., 2002). Patient satisfaction with the mammography experience is strongly associated with treatment by the mammography personnel. Having a mammography personnel who is friendly, knowledgeable, respectful, competent, and willing to explain the screening is a determining factor in patient satisfaction (Ndikum-Moffor, Braiuca, Daley, Gajewski, & Engelman, 2013).

Women who reported socioeconomic- and race-related discrimination during previous health care experiences report less engagement in regular mammography. To ameliorate discrimination that women experience within various health care settings, interventions such as cultural competence trainings for mammogram personnel might be critical in providing a more “acceptable” and thereby “accessible” experience for AA women. Cultural competence trainings should equip personnel with knowledge, tools, and skills to better understand and manage sociocultural issues based in health beliefs and values during the clinical encounter (Betancourt, Green, Carrillo, & Ananeh-Firempong, 2016). Interventions should include structural processes of care that guarantee full access to quality health care for all women (Betancourt et al., 2016).

It is important to identify and address specific cues that signal discrimination during mammography to reduce perceived discrimination experience among AA women attending mammography. There is need to address medical mistrust, given AA historic and contemporary racism within medical settings (Molina, Kim, Berrios, & Calhoun, 2015). Perceived health care discrimination has important implications for satisfaction with the mammography experience and regular screening.

Finally, stories shared among AA women are powerful influences on mammography decisions. Women who observed their family member’s experiences with breast cancer diagnosis reported a heightened sense of vulnerability and perceived breast cancer risk. Family members and spouses are important components of the social networks and may play an important role in creating positive subjective norms to encourage mammography (Allahverdipour, Asghari-Jafarabadi, & Emami, 2011). The inclusion of positive stories in interventions is a demonstrably effective way to improve screening as evidenced by projects such as the “witness” project (Erwin, Deloney, Dal, & Erkman, 1996). The witness project is a culturally sensitive community-based cancer education program through which AA cancer survivors and LHWs increase awareness, knowledge, screening, and early detection behaviors in rural and low-income women. The premise of this model for promoting screening is that the women, who are respected members of the church or local community, will be able to understand the viewpoints of the women they are “witnessing” to and using this culturally based understanding be able to meet the women where they are and influence them to adopt the helpful behavior (Boyd & Wilmoth, 2006). Another successful model using LHWs is The Save Our Sisters Project (Eng, 1993). This project, implemented in rural North Carolina, used natural helpers to reach AA women through their existing kin, friendship, and job networks.

Limitations

Participation was limited to women who self-selected to participate in the study. Though we had access to all the AA women in the ED, their experience may differ from other AA women.

Conclusion

The PEN-3 model can serve as an excellent assessment guide to designing culturally appropriate interventions. In this study, we examined the relationship and expectations domain of the PEN-3 model, findings support that structural resources, mammography-related fears, cultural beliefs, access, and family influences play a pivotal role in mammography engagement.

Future research should consider the use of Pen-3 framework as a guide in the development of innovative culturally and linguistically relevant multicomponent approaches to improve mammography. Such interventions should address identified salient factors specific to AA women. Storytelling health messages featuring AA women that incorporate cultural values and address perceived mammography-related barriers will promote screening for AA women. Identification with story characters can lead to changes in relevant health-related knowledge, attitudes, beliefs, and behaviors (Murphy, Frank, Moran, & Patnoe-Woodley, 2011). Although tailored interventions efficiently provide women the individual knowledge they need to identify and overcome barriers, this approach does not provide the emotional and logistical support women may need to act on what they have learned and may not capture all relevant contextual information (Sohl & Moyer, 2007). Using LHWs or indigenous women trusted by the community (Simon, 2006) to provide support and navigation to mammography resources can be a complementary approach. LHWs programs have made strong contributions toward the elimination of health disparities and are important to promote health, engage community members, and contribute to community empowerment and capacity-building (Shelton, Charles, Dunston, Jandorf, & Erwin, 2017).