Breast cancer screening in older black women

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Breast Cancer Screening in Older Black Women Noma L. Roberson, Ph.D.

The objective of this study was to report findings about older black women's responses to breast health education and screening. Findings were reported from a community-based intervention designed to improve breast screening services for women in Erie County, New York. A 34-foot mobile screening and education clinic was used to overcome barriers such as accessibility and cost. Re- sults from a sample of 271 older black women showed that they participated in breast health education programs and received clinical breast examinations when these services were offered in their neighborhoods. How- ever, there was low participation in screening mammography offered at a local hospital. Low participation was attributed to structural and functional barriers in the delivery system. This study emphasizes the particular importance of education and screening offered as one unit of service. Further, it emphasizes the need to examine older black women's reported experiences after participation in screening. Cancer 1994; 74:2034-41.

Key words: older black women, breast cancer, breast screening, breast health education, clinical breast examination, mammogram, mobile clinic.

Participation of older black women in breast screening activities is a relatively new area of investigation. Little is known about these women's breast cancer screening practices. In addition, there are no studies specifically

From the Department of Cancer Control and Epidemiology, Roswell Park Cancer Institute, Buffalo, New York.

Supported by New York State Department of Health contract C- 010043.

Special thanks to the following staff Martha Oliveras, Vivian Evans, Nina Greene, Loretta Wilson-Fields, R.N., Dorothy Soda, R.N., Grace Turner, Marianne Cam, Angel Rivera, George Nunn, Wil- liam Aungst, M.D.

Address for reprints: Noma L. Roberson, Ph.D., Department of Cancer Control and Epidemiology, Roswell Park Cancer Institute, Elm and Carlton Streets, Buffalo, NY 14263.

The content of this paper are solely the responsibility of the au- thor and does not necessarily represent the official views of the New York State Department of Health.

Received May 24,1994; accepted May 25,1994.

designed to provide data to thoroughly examine the impact of breast cancer screening on breast cancer incidence and mortality rates among older black women.

What is known is that older women (i.e., those 65 years of age and older), including older black women, underutilize breast screening services.'-j Therefore, there is a need to improve this health practice in an effort to detect breast cancer early.

A beginning step to address this problem is to learn about older black women's responses to breast health education and participation in screening. This paper de- scribes the results from an intervention study, the Breast Cancer Detection Project, which was established through a mobile clinic, that examined older black women's responses to breast health education and screening. The project was designed to improve participation in these areas.

Background

For the past 2 decades, national studies have shown that breast cancer is the most common cancer seen in American women.4z5 Approximately 60% of breast cancer cases occur in women older than 60 years of age.' Incidence rates rise sharply with age and have increased steadily since 1976.4 Studies suggest that older women are at increased risk of diagnosis with advanced-stage breast cancer.6-8 Overall mortality rates have not changed for the general female population, however, despite apparent advances in early detection methods and treatment.

Black women, despite having a lower incidence of breast cancer than white women, are more likely to experience high mortality and therefore present with advanced disease.g-'' Black women also have lower 5-year survival rates compared with the general population. '*-"

Higher mortality among black women has emphasized barriers to breast screening, including problems attributable to the system of health care delivery and problems related to women's own attitudes and behav-

Breast Cancer Screening/Roberson 2035

iors. Barriers attributable to the health care system include ac~essibility,'~~'~-'~ ~ o s t ' ~ , ' ~ and physician attitudes toward recommending s~reening . '~~ '~ , '~ One study shows that when accessibility to health care is not a factor and physicians are seen on a regular basis, low- income black women still are not getting adequate breast cancer screening." Among black women, it ap- pears that knowledge'2T16f20,2' and belief^'^,'^^^^ have been found to be key predictors of breast screening behavior. From a provider's perspective, the presence or absence of active recruitment of low-income black women, rather than reliance on physician referral, ap- pears to be an important predictor of screening behavior. 12,1523 Regardless of barriers to screening, black women are less likely than the 31 % of women in the general U.S. population to follow current breast cancer screening guidelines for early breast cancer

There is the potential to decrease mortality through early detection. Studes show that, with regular use of breast screening (i.e., clinical breast examination and screening mammography), breast cancer mortality could be decreased by approximately 30%.26-28 Al- though breast cancer is a major threat to older women and they have a sixfold risk compared with younger women,29 there remains a critical problem about these women's failure to undergo regular screening and examination.

Because the U. S. population is aging, with approximately 15% of the population expected to be older than 65 years of age by 2010,30 the importance of breast cancer as a health problem of older women, including black women, will increase. This is a reason to address barriers to screening and to understand the history and experiences that may influence older black women's screening practices.

History and Experiences of the Older Black Populations

It is difficult, if not impossible, to understand the elderly black population without an appreciation of their percep- tion of historical events and experiences relative to health care. Particularly, an assessment of black Americans in this country must include a review of their environmental experiences. Experiences in slavery is one example.

According to S a ~ i t t , ~ ' the health care system for slaves was based on several concerns. First, slaves were not allowed to malinger. Second, there was concern about the owner's property. Third, preventing the spread of disease was a priority. Finally, there was an actual concern for the health of the slaves. The health care system was controlled and executed primarily by overseers. While slaves often provided care for their

masters, they were not allowed to care for each other. To this end, a law was put into effect forbidding slaves to provide health care to each other under the threat of death. Fear of this law, combined with the concern about medical care provided by the overseer, resulted in the development of an underground health care system. That system included spiritualism, voodooism, and other appro ache^.^'

In addition to the historical events about the health care system, other situations evolved during slavery that continued to have an impact on the black elderly population. This was the breakup of the family unit and the loss of the traditional place of honor of the elderly. During the postslavery period of this country, there was an attempt to restore family units and the status of the elderly in black families.32 Unfortunately, throughout this period, poverty and discrimination had a negative impact on the health of blacks, including the aged population. Poor environmental conditions and the virtual absence of health care led to a high prevalence of &ease, disability, and death among blacks in the postslavery era.32

In the virtual absence of health care, the social support network, particularly from the family unit, was viewed as a buffer against environmental stress. This network has been examined for both structural (size, linkages, and compositions) and functional (affective, reciprocal, and instrumental) features.33

Stack34 found networks of kin and friends support- ing each other. Cantor et al.35 found that elderly black women continued to perform instrumental and effective familial roles far beyond the age range custom- ary among whites. Researchers argue that older black women were involved more highly in a mutual assistance system among and between family members. In addition, compared with older white women, a sub- stantially greater number of older black women are heads of fa mi lie^,^^,^^ and the extended family pattern persists in the African-American culture.

The aging process of blacks is another area that must be considered when dlscussing health care. Al- though aging can represent a period of increasing free- dom from restricting demands for the black elderly population, more often than not, it means increased suscep- tibility to economic loss, chronic health problems, depression and despair, social isolation, and continued employment for survival.38

The health of the aged population has been approached from two perspectives, the medical model and the functional model. The medical model defines health in terms of the presence or absence of disease.39 Tfus model is used more commonly by health care professionals. The functional model defines health in terms of level of functioning (i.e., degree of fitness rather than extent of pa tho log^).^^

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Impairment of the ability to function independently at home or in one’s community is the common pathway to the array of diseases encountered frequently with age. When there is impairment of ability to function, elderly blacks frequently do not obtain physician examinations at the same rate as their white counterparts do.38 Therefore, early recognition of problems does not occur. Often, when an elderly black person seeks medical services, his or her condition is usually in a late, advanced stage. The black elderly often identify sick- ness as weakness, and their complaints sometimes are not specific. Rather, their complaints usually are can- tered around their ability to perform the activities of daily living, such as cooking meals, cleaning the house or rooms, or doing the laundry. It is generally when a condition incapacitates them that they will seek care.41 In the process, the black elderly population displays complete confidence in their physician. Unfortunately, the physician attitude toward medical care and treatment for this group often is negative and indifferent.

There remain a few elderly blacks who resort to folk cures; those who do frequently do so because these ideas are an element in their particular racial/ethnic id en tit^.^' Ideas about health, illness, and healing are tied so closely to the values and behaviors of people’s lives that knowledge about race and ethnicity may provide significant in- sight into the nature of the health practices of the elderly black population in the United States.

The black elderly have many health beliefs and behaviors that are shaped by both culture and class. These are shaped by education, income, and occupation, as well as other environmental health factors. These beliefs and attitudes determine when a health event is de- fined as an illness, when help is sought, what type of help is sought, and from whom. The crucial implication of this practice for health care in the elderly is that de- terioration of functional independence is usually a reli- able indicator of inadequately managed d i ~ e a s e . ~ ’ , ~ ~ Those diseases that produce functional impairment in the elderly often are treatable and improvable; however, early detection is essential.

Breast cancer is an example of a disease that is treatable if detected early. Unfortunately, little is known about older black women’s breast cancer screening practices, which are essential for early detection. His- torical events and experiences may shed some light on the decision to obtain screening.

Methods

Intervention Model

This was a descriptive study designed to determine older black women’s responses to a community-based

intervention. The intervention was a New York State Department of Health’s Breast Cancer Detection Project designed to improve participation in breast health education and screening among minority women, particularly blacks, Hispanics, Native Americans, and other low-income, underserved women in Erie County, New York. Because of the lack of research about older black women’s breast screening practices and the increasing concern to improve mammographic screening, specific emphasis was placed on the study population.

A basic assumption for this study was that older black women encounter carcinogenic exposures similar to those to which other older segments of the population are subjected, and they therefore would benefit from the same kinds of cancer control measures (e.g., education and screening) that have been useful in other populations. Furthermore, it is believed that historical events and experiences may be associated closely with poverty, which, in turn, is related to limited opportunity and access to health care.44 These are factors that most often are barriers to screening and serve as an indication that these women may be hard to reach. To develop an appropriate strategy for addressing barriers that may affect breast cancer screening in older black women, attention must be focused on their screening practices.

The theoretic model that served as a guiding framework to enhance an understanding about overcoming barriers that may influence participation in education and screening is shown in Figure 1. This model integrated communication principle^,^^ the Health Belief

and learning theory47 on the basis of the contribution each would make toward a rational decision to participate and/or utilize preventive health services focused on breast screening. A combination of these models emphasized that communication is a valuable source for disseminating cancer information that hope- fully increases awareness and knowledge and influence beliefs. The Health Belief Model influences the self-per- ception of being at risk for a disease such as breast cancer and serves as a cue to action for decisions to adopt breast education and screening as health practices. Through a learning process, participants gained knowledge of the proper techniques for adopting these health practices, the ability to perform the practices correctly, and the procedures that encourage examinations for early cancer detection.

The model attempts to explain that women may be likely to adopt breast screening practices when communication, knowledge, and beliefs are in place.

Breast Cancer Detection Project

The Breast Cancer Detection Project was designed and began operation in 1990 in Erie County, New York. Its

Breast Cancer ScreeninglXoberson 2037

TARGET POX'ULATION L.r' Communication

hinfiples

-1-

BEHAVIORAL CHANGE

Figure 1. The theoretic model for guiding the development of cancer screening and education programs in hard-to-reach populations. This is the model that served as a guiding framework to enhance an understanding about overcoming barriers that may influence participation in education and screening. This model integrated communication principle^,'^ the Health Belief theory47 on the basis of the contribution each would make for a rational decision to participate and/or utilize preventive health services focused on breast screening.

and learning

specific objective was to provide breast health education (i.e., breast self-examination [BSE] instructions) and breast screening (i.e., clinical breast examination and mammography). Although the project was designed to provide services to women in Erie County, New York, specific attention was focused on reaching minority women (Le., blacks, Hispanics, Native Ameri- cans, and other low-income, underserved women). This study will report on one segment of the target population: older black women.

A community assessment, based on a community- mapping procedure, was conducted in census tracts throughout the areas to identify the target population and the community resources and agencies serving this population.

Based on focus group findings from a previous an intervention to target black women was de-

signed and implemented. The central focus of the intervention was to eliminate barriers of cost and accessibility to breast screening. To this end, a 34-foot mobile van was purchased and designed to provide free BSE instructions and clinical breast examinations. This mobile education and screening clinic traveled throughout neighborhoods, making stops at senior citizen centers, senior housing complexes, health care facilities, churches, community health centers, senior citizens'

outdoor gatherings, and block club events. Approxi- mately four programs per month were devoted to older women.

The mobile clinic consisted of a classroom that seated 15-18 women, an examination room, and a li- brary. The mobile unit was staffed by a driver/security person, outreach workers, nurses, physicians, and community volunteers representative of the targeted communities.

All staff completed a 6-week training program before participating in community activities. Outreach workers provided BSE instructions, including the use of brochures, videos, and silicone breast models. Nurses and physicians performed need assessments and clinical breast examinations and made recommendations and/or referrals for mammograms at a comprehensive cancer center, a private practice, or a health clinic.

To ensure that women would schedule and keep appointments for mammograms, outreach workers as- sisted women and sent a reminder message before the scheduled appointment. Transportation was scheduled when required. In addition, outreach workers were available to accompany women to their appointment, if such assistance was requested. Tote bags, pens, pins, and T-shirts were some of the incentives provided for participation.

Data about breast education and screening practices were collected via a client-intake form. It was completed by each program participant before receiving services. Sampling of convenience was employed for the study because of the practical impossibility of obtaining a truly representative sample. The Statistical Package for the Social Sciences49 was employed to implement statistical procedures.

The study population consisted of 271 older black women, 65 years of age and older, who completed a client-intake form. This was 13% of the total target population recruited from the community.

Results

Of the study population, 70% were aged 65-69 years, 20% were 70-74 years of age, and 10% were 75 years and older. Thirty-three percent of the women had completed only elementary school, 28% had less than a high school education, and 20% had completed high school. Seventy-nine percent had household incomes of less than $12,000, and 14% had household incomes between $12,000 and $18,000. Thirty-eight percent of women reported having Medicare only, and 42% had Medicare plus private insurance. The remainder had Medicare and Medicaid.

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‘EDU ‘CBE ‘MMG Figure 2. The percentage of older black women recruited for education and screening (n = 271). EDU: education; CBE: clinical breast examination; MMG: mammogram.

As shown in Figure 2, 99% of older black women participated in breast health education classes. Less than 20% completed the survey to determine what was learned in the class or how well they performed the technique on the breast model. Seventy-five percent of the women continued through the needs assessment and received a clinical breast examination after education. Thirteen percent of the women followed the referral and/or recommendation to obtain a mammogram at the local hospital. Less than 5% required transportation for their appointments.

When asked about their BSE practices, only 20% reported that they practiced regularly, 47% of women reported that they performed BSE occasionally, and 33% never practiced. Fifty-seven percent of women reported having had at least one mammogram: 10% reported receiving a mammogram within the previous year, 14% reported having had a mammogram within the previous 2 years, and 31% said that they had had one mammogram within the previous 5 years.

Discussion

This study of older black women’s responses to breast health education and screening provides a unique view of a population that long has been ignored in cancer control research. Although there have been a few survey s t ~ ~ d i e s ’ ~ , ~ ~ * ~ ~ about breast cancer screening among older women, none have based findings on interventions that personalize program activity, increase access to services, limit cost, and facilitate completion, particularly for older black women. In addition, there have been no studies wherein interventions for older black women were guided by a theoretic framework that integrated useful models for program planning and im- plementation. The present study included both of these

factors in an effort to address the underutilization of breast health education and screening.

Findings of the present study show that older black women who participated in education and screening generally have low incomes and less than a high school education. The majority have some type of health insurance.

Older black women’s low income most likely is associated with and is a function of their employment experience. Many older black women had disadvantaged work experiences throughout their employment histo- ries. They are more likely to have worked in low-status jobs, characterized by sporadic unemployment, ex- tremely low earnings, and few, if any, benefits. They also generally have been affected by employers’ last hired, first fired policies. Therefore, the experience of low income is more evident through advanced age.38

Similar to income, limited education is a function of limited opportunities during women’s earlier years. In the past, lifetime experiences were centered primarily around employment for survival of the family; therefore, education was not a priority. In fact, because of limited education, in addition to some physical impairments, additional time and assistance were required for participants to complete data intake forms for this study.

The majority of women in the study had some type of health insurance, whether Medicare, Medicaid, private, or a combination. Although it would appear that cost would not be a barrier to obtaining breast cancer screening, three important factors must be kept in mind. First, high deductibles for Medicare may be a problem for women with low incomes, as may small payments for services not covered completely by this insurance. Women are required to pay for health care services until deductibles are met. Second, Medicare coverage is provided every other year. Therefore, on odd years, women are required to pay out-of-pocket unless they have private insurance. Third, not all physicians accept Medicare and Medicaid payments for health care services.

Findings showed that older black women were recruited for and participated in education sessions to learn about the BSE technique. Approximately three fourths of these women were given a clinical breast examination. The favorable response to education and clinical breast examination may be attributed to the elimination of barriers associated with access and avail- ability of services. The mobile screening clinic appeared to be a useful strategy for providing services in women’s neighborhoods. Recruitment messages designed to target older women and outreach workers representa-

Breast Cancer ScreeninglRoberson 2039

tive of their communities were likely to be key factors in communicating with these women.

Study results showed that women were less likely to obtain a screening mammography than education and clinical breast examination. As shown in Figure 2, only 13% of older black women who completed education obtained a mammogram. Low participation in screening mammography perhaps could be attributed to the structure of the program and the health delivery system (i.e., the appointment system). Women were required to take additional steps to make appointments and obtain mammograms at a local hospital. Mammo- grams were not provided at the mobile clinic; however, every effort was made to assist women in scheduling appointments. At the local hospital, the structure of the appointment system was such that women were subjected to a 2-4-week waiting period. The system was not designed to be flexible enough to accommodate clients from a community program in a timely fashion. The ideal approach would have been to schedule appointments within 2-3 days of participating in an education program and undergoing a clinical breast examination.

Long waiting periods for appointments increases the probability of noncompliance. It is likely that noncompliance would result in more serious problems for older women than for the general population. First, in the case of breast cancer screening, clients were intro- duced to a relatively new medical test they were required to undergo. Second, they were likely to have had some reservations about going to a new or unfamiliar facility to receive services. For this population, there may also have been some reservations about receiving services at a specialized hospital, such as a cancer center. Third, it is not evident what influence the providers at the mobile clinic had on women’s decisions to follow through on referrals and/or recommendations. Fourth, it is not known what importance women placed on obtaining a mammogram. Fifth, it is not evident what physical impairments or other environmental circum- stances may have prevented older women from keeping appointments.

Transportation was not an impediment to screening, because van services were provided. For those women who kept appointments, family and/or friends usually provided transportation and accompanied them to the clinic. This demonstration of support may be considered a factor that enhanced compliance.

According to study findings, the majority of older black women were not practicing BSE monthly. It was likely women were not aware of the technique and its importance. For those women who reported practicing occasionally, it was uncertain what the quality of the

technique was. Most women failed to complete the survey that would have provided data about knowledge and performance of the correct steps for BSE. Observa- tions showed that women experienced some difficulty completing intake forms and, more often than not, needed some assistance. It appeared that this was attributed to their educational level.

Findings showed that more than one half of the women reported that they had received a mammogram at least sometime within the previous 5 years. This was an indication that these women were knowledgeable about mammograms and had taken the initiative to be screened. The critical question was whether women ac- tually knew what a mammogram was. It was possible that they were confusing a mammogram with another medical test such as an electrocardiogram. Results from focus group sessions for a national study (Worden K, per- sonal communication, August 1991) showed that this was the case in a study of older black women’s reports on obtaining screening mammography. When asked to describe the mammograms that they had received, women described an electrocardiogram.

Several limitations of this study should be considered in assessing its results. First, cancer control and behavioral science data on racial/ethnic older populations are sparse; therefore, caution is warranted when com- paring the responses of this population segment to those of the general population. Second, there is a per- sistent use of small samples of blacks in this study, particularly segments of the older black population, such as older black women. Third, this study was limited to findings from a relatively small sample size. Lastly, findings relied on data from self-reports.

Conclusions

Overall, these results suggest that older black women will participate in breast health education programs and undergo clinical breast examination when these services are provided in their neighborhoods. The use of a mobile screening clinic appeared to be a useful strategy for this intervention.

Participation in screening mammography was less evident, particularly because women were required to receive this service at a different location. It was the structure and function of the delivery system, not barriers to cost and accessibility, that appeared to be attrib- uting factors to low participation.

These results emphasize the particular importance of education and screening being offered as one unit of service. In addition, it identified areas that warrant further investigation in this population segment. In particular, there is a need to examine older black women’s

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knowledge and beliefs about education and screening. Furthermore, there is a need to design interventions that address structural and functional barriers in the delivery of breast cancer screening. These interventions should be implemented and evaluated to determine the program impact on older black women’s behavior and

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Documents

Breast cancer screening in older black women