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Little Rock, Arkansas. Breast cancer ... C 2000. From the Department of Surgical Oncology, Arkansas Can- .... patients without a history of prior surgery and over.
USING CULTURAL BELIEFS AND PATTERNS TO IMPROVE MAMMOGRAPHY UTILIZATION AMONG AFRICAN AMERICAN WOMEN: THE WITNESS PROJECT® Eric J. Bailey, PhD, MPH, Deborah 0. Erwin, PhD, CTR, and Precilla Belin, MA Little Rock, Arkansas

Breast cancer and early detection of the disease is a significant issue for all women. Moreover, the sociocultural implications in the differential mortality rates increased interest in possible barriers to screening practices. Recently, a number of studies have investigated African Americans' cultural beliefs associated with breast cancer. This study is based upon qualitative focus group data gathered from 1989 to 1991 and 1996. This article provides focus group data that informed a culturally competent community-based cancer education program for AfricanAmerican women-the Witness Project®. Analyses of the qualitative data along with the quantitative outcome data revealed a direct relationship between cultural beliefs and patterns with mammography utilization. The once perceived cultural barriers can actually be applied as a cultural intervention strategy to improve breast cancer screening initiatives designed specifically for African-American women. (J Natl Med Assoc. 2000;92:136-142.)

Key words: cultural beliefs * breast cancer * mammography utilization * African Americans

According to the American Cancer Society (1998), women 40 years and older should have a mammogram every 1 to 2 years as well as an annual clinical breast examination performed by a health care professional, and perform monthly breast selfexaminations. The goal of mammography and breast examinations is to identify breast abnormalities that may be cancerous at an early stage before physical symptoms develop.' To improve mammography utilization and breast C 2000. From the Department of Surgical Oncology, Arkansas Cancer Research Center, The University of Arkansas for Medical Sciences, Little Rock, Arkansas. Requests for reprints should be addressed to Dr. Eric J. Bailey, Comprehensive Minority Biomedical Branch, National Cancer Institute, 6116 Executive Plaza Blvd., Bethesda, MD 20892. 136

cancer awareness among African-American women requires understanding the concept of "culture," a patterned way of life that has special meaning to the individual and his or her social group. Understanding the culture of an individual is of special importance in health-related situations because it influences whether an individual will utilize or avoid available health care services.2 Specifically, one's culture is a system of shared beliefs, values, customs, behaviors, and artifacts that members of a society use in coping with one another and with their world, and that are transmitted from generation to generation through learning.3 This learned culture guides action and beliefs as the individual meets both familiar and new life situations.4 To understand the direct effect that cultural beliefs and patterns have on mammography utilization, the research team examined qualitative ethnographic data from focus groups conducted in 1989 JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION

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to 1991 and 1996. This qualitative focus group data not only explored traditional beliefs about breast cancer but also assisted in the design of a culturally competent, community-based cancer education program-the Witness Project®. The Witness Project® was developed through a theoretical base in health education, learning styles, and ethnographic fieldwork.5 The concept is to provide culturally appropriate role models, referred to as Witness Role Models (WRMs), in the form of African-American breast and cervical cancer survivors who witness- or talk-about their cancer experiences with other African-American women and natural helpers, called Lay Health Advisors. The WRMs assume new spiritual and social importance from working in the project. They are able to take the lead in creating cancer education awareness within their communities because of their cancer experiences.6 The WRM concept was a direct outcome of the qualitative and quantitative data collected with African-American women in Arkansas.

BACKGROUND

Epidemiological Data Breast cancer is the most common form of cancer among women in the United States. Breast cancer is the most frequently occurring type of cancer in African-American, Hispanic/Latina, and white women. Overall, breast cancer incidence rates are higher for whites than for African Americans or Hispanics.' After increasing about 4% per year in the 1980s, breast cancer incidence rates in women have leveled off in recent years to about 110 cases per 100,000.1 Racial/ethnic patterns of mortality differ slightly from those observed for incidence. The highest ageadjusted mortality occurs among African-American women, followed by white, and Hawaiian women.7 The higher breast cancer mortality among AfricanAmerican women is related to the fact that, relative to white women, a larger percentage of their breast cancers are diagnosed at a later, less treatable stage.7-'5 In the age groups 30 to 54 years and 55 to 69 years, African-American women have the highest rates, followed by Hawaiian, and white non-Hispanic women.7-9 The reasons for this racial difference in stage may be related to social and economic factors as well as cultural beliefs and patterns associated with breast cancer and mammography utilization among African Americans.15 JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION

Breast Cancer Screening A number of studies have examined the issue of breast cancer screening. Epidemiological studies have revealed predictable patterns of experience with mammography by age, race, and sociodemographic factors.16-2' For example, women between 40 and 64 years of age are more likely to have ever had a mammogram and a recent mammogram than are women 65 years of age and older.16'22 White women are more likely to have ever had a mammogram, and to have had a mammogram recently than other groups of women. Higher education and higher income are also positively associated with ever having had a mammogram and having had one recently. Finally, women who live in urban areas are more likely to have ever had a mammogram than are women who live in rural areas.20,2' Furthermore, data from a national study revealed that the major barriers to early detection of breast cancer among older minorities are:

1. Inaccurate knowledge of breast cancer and breast screening. 2. Virtually no data on knowledge and attitudes about breast cancer for all minority groups. 3. Low awareness for early detection. 4. Lack of health insurance to cover screening mammograms. 5. Lack of reimbursement to physicians for clinical breast exams. 6. Lack of encouragement from physicians to schedule a mammogram. 7. Lack of early detection instruction and discussion programs.23 Most of these factors contain a significant cultural component (e.g., misconceptions regarding the causes and symptoms of cancer, alternative medical practices, and lack of trust from mainstream medical professionals).

Cultural Beliefs and Breast Cancer Recently, a number of studies have investigated African Americans' cultural beliefs associated with breast cancer.22-28 A study by Loehrer et al.27 of 128 African-American and white cancer patients found differing perceptions of breast cancer among various social and cultural groupings. Misconceptions regarding the causes and treatments of cancer were associated with increasing age and decreasing level of formal education. The beliefs that bumps or VOL. 92, NO. 3, MARCH 2000

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bruises cause cancer and that cancer is contagious were more common among elderly and less educated patients.27 Loehrer et al.27 also stated that elderly, less educated, and African-American patients were more likely to have confidence in nontraditional cancer treatments such as salves (an analgesic or medicinal ointment that soothes or heals) and vitamins. When asked whether surgery caused cancer to spread, all patients without a history of prior surgery and over 40% of those who had previous surgery believed this statement to be true.27 Gregg and Curry25 found similar results. Interviews with 89 African-American women revealed that all the informants' explanations of the cause of cancer reflected the belief that cancer is the product of either an understandable biological process and/or the will of God. That cancer originates as a bruise or sore that won't heal was the most frequently cited explanation given by 21% of the women.25 Additionally, 25% of the women interviewed explained that while people should try to live healthy lifestyles (e.g., avoiding excessive smoking and drinking), their destinies are ultimately determined by God.25 Finally, a study by Lannin et al.'5 of 540 patients in eastern North Carolina found that a significant number of the African-American women presenting with late-stage disease were reluctant to seek medical treatment for cancer because of their fears about how the disease would impact on their relationships with the men in their lives. These women were afraid that their husbands or male partners would leave them if a cancer diagnosis became known, both because they would no longer be physically attractive but also because they might become burdens to men financially and emotionally.'15 In recognizing the cultural role in hesitancy to obtain screening, it may be possible to modify and to use key cultural beliefs in a way that would lead to earlier breast cancer diagnosis and still be consistent with the underlying cultural attitudes of the target population.28'29 Research studies have shown that African-American women are greatly influenced by their cultural beliefs associated with breast cancer and breast cancer screening.'"I-4

METHODS This study is based upon qualitative data gathered from focus group sessions conducted between 138

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1989 and 1991 and in 1996. The primary purpose of these data were to provTide a framework to understand and apply cultural data to the development of an intervention to increase breast cancer screening behaviors. The cultural data were also used to assess how this intervention could further address direct utilization of services. Focus group interviews are a qualitative research method that provides rich data on dynamic attitudes of individuals interacting in a group about a designated topic. Focus group methodology uses a standardized series of questions to elicit individual responses within the context of a group. This method benefits from both group interaction and group dynamics. In this environment, participant responses include the interplay of group members, which allows for greater depth of response, social context, and emotion. In addition, focus groups allow the researcher to hear directly from participants, using their own vocabulary, language, and communication patterns- essential components when working with differing ethnic and cultural groups. In general, the use of qualitative methods such as focus groups helps to discover cultural health patterns, to witness the actions of informants, and to understand the informants' perspective.315 The first set of qualitative focus group data vas gathered from 1989 to 1991 and consisted of five groups of African-American women. The sample size of each focus group varied:

* * * * *

Focus Focus Focus Focus Focus

group 1: 8 women group 2: 28 women group 3: 8 women group 4: 5 women group 5: 11 women.

Sixty women (median age 50 years) participated in the five focus groups. Sixty-six percent of the women had a high school degree or less, and 62% had annual incomes below $15,000. The facilitators consisted of a medical anthropologist, a health educator, an African-American health educator student, an African-American breast cancer patients, or a combination of the above. The facilitators were trained and ethnically matched to the focus groups. The groups met in urban and rural community-based and clinical settings in Little Rock, North Little Rock, and Wynne, AK. If transportation wvas not provTided, the grotup wvas VOL. 92, NO. 3, MARCH 2000

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usually asked to meet in the evening or on Saturday. Food or refreshments were provided at all but one of the focus group meetings. Each focus group began with an "icebreaker" wvhich incorporated humor and sharing. The leader would give a brief, preliminary "statement of purpose" and explain why she was there, why this was important to her, and what she hoped to accomplish-a kind of "what's in it for you and me" speech in an effort to build trust and credibility. The facilitators tried to emphasize that they needed to learn from the group, and that the group could make a difference in the kind of cancer education programs that would be available for African-American women in Arkansas in the future. The second set of focus group data, gathered in 1996, was comparable to the first set of data gathered during 1989 to 1991. Although the number of focus groups was less (total = 3) and men were included in the sample, the procedure was similar for each group. As with the earlier groups, the sample size varied: * Focus group 1: 20 (19 women and 1 man) * Focus group 2: 16 women * Focus group 3: 3 women.

Thirty-nine women (median age 50 years) participated in the three focus groups. Over 50% of the women had a high school degree or less, and over 50% had annual incomes less than $15,000. The facilitators consisted of a medical anthropologist and African-Amnerican health educators. The groups met in rural commtunity-based settings in eastern Arkansas. The primary purpose of the second set of focus groups were to determine the perceived or actual barriers in seeking health care services from local health care facilities.

RESULTS The research team used thematic and pattern analyses to analyze the focus group data. Thematic and pattern analyses identify and bring together components or fragments of ideas or experiences that are often meaningless when viewed alone. Patterns are generally small uinits of behavior that contribtute to themes. Themes are larger units of behavior derived from patterns, that can explain multiple aspects of human behavior. When analyzed toJOURNAL OF THE NATIONAL MEDICAL ASSOCIATION

gether, themes and patterns can elicit a detailed analysis of the cultural issues being investigated.36

Focus Group Data: Set 1 Qualitative data analyses from the first set of focus groups (1989 to 1991) revealed the following seven themes: 1. Breast cancer is primarily a white women's disease. 2. There is fatalism about cancer. 3. Cancer is a stigmatized disease, so don't talk about it. 4. Cancer is a punishment from God. 5. Care is sought from social and cultural networks. 6. Educational messages from familiar social and cultural sources are considered truthful. 7. Intra-ethnic preferences for role models.

For example, many African-American women did not perceive themselves at risk for breast cancer, did not think that the incidence was very high, and were generally unaware and unconcerned about the topic. On the other hand, for participants with any experience or knowledge about breast cancer viewed the experience as negative. Very few women knew wvomen in their church, family, or circle of friends who had survived breast cancer. Themes 3 and 4 reflect the continual stigmatization and cultural belief as to the cause of breast cancer. For example, in their experiences, people diagnosed with cancer often keep it a secret. One participant revealed for the first time that she had had breast cancer 10 years before. Her neighbor and best friend, sitting beside her in the focus group, did not know it until that moment. Mothers often don't tell their daughters that they have a lump or that they are diagnosed with cancer. Moreover, if the diagnosis is shared with a "significant other," it is believed that the male will abandon the woman, especially if the cancer is cervical or breast. In addition, the cause of one's cancer may be perceived as some kind of punishment from God. "It 's juts' likeJob in the Bible; some folks think that you're bein punished for somnethin 'you 've done i you get cancer. "

Therefore, even when African Americans have a positive experience with an early stage cancer, they are less likely to talk about it because they may interpret it as some kind of failing. VOL. 92, NO. 3, MARCH 2000

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Finally, themes 5, 6, and 7 reflect cultural patterns in obtaining health information. These African-American women shared that they used their social and cultural network for seeking care and emphasized they need to receive health information and care from "trusted" resources. "Everyone that had been to the health clinic was very impressed and liked going there."

Many of the women did not trust messages from the media or impersonal invitations sent through the mail. They do not expect an organization to be altruistic. Rather, they consider that the sponsor of a "free" program must be luring the women for some other purpose. However, if some trustworthy person (e.g., an elder, close friend, and/or physician from the community) says it is worthwhile and she invites other women to attend with her, then the potential participants are more likely to see the program as credible. "I came because Murdie asked me to."

"If I needed somethin', I'd go to my momma.

Many women said that their mothers would be more likely to attend a program if they went with their daughters-especially older women. This reliance upon one's social and cultural network also indicates that health educational information needs to come from individuals who are perceived to be from similar social, cultural, and ethnic backgrounds. If role models are used to motivate African-American women to participate in breast cancer intervention programs, these role models should be from similar social, cultural, and ethnic background. Thus, there is an intra-ethnic preference for role models among African-American women.

Although there were some similarities between the two datasets, the qualitative data gathered during the second set of focus groups provided distinct information. For example, theme 1-cancer is not a punishment from God contrast sharply with the qualitative data from the first set of focus groups stating that cancer is a punishment from God. Specifically, informants stated the following: "Not God's will that there is illness and or cancer in the

world. It's not God's fault or your fault if you become ill with cancer.

Informants also felt that the individual is responsible for maintaining their health and causing their illness: "God gives us senses, we know what we are sup5posed to eat and know we should exercise, that is strictly up to us if we do it or not. " "It is up to us to take care of our bodies by eating properly

and exercising." "Not God's fault when sick."

Finally, theme 4, "bad illnesses symbolize loss of faith," coincides with the qualitative data from the first dataset. Specifically, one informant stated the following: "Get a bad sickness is just a learning experience, test of faith. "

Therefore, a bad sickness such as cancer may symbolize a test of one's spiritual orientation. An additional set of findings from the qualitative data served to provide evidence for the focus groups' lack of rapport with the local health care facilities and the local health care professionals. The following comments highlight this finding:

Focus Group Data: Set 2

"Facilities are good, just not enough doctors. "

The qualitative data analyses from the second set of focus groups (1996) revealed the following four themes:

"Too fezv family doctors, some aren 't taking nezv patients."

1. Cancer is not a punishment from God. 2. The individual is responsible for maintaining health. 3. The individual is responsible for their illness. 4. Bad illnesses symbolize loss of faith. 5. Lack of rapport exists with local health care facilities and health care professionals. 140

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"Took my son to get immunizations there, the facility was clean and neat but was real crowded." "No problem except have to go to another location for the mammography, may be hardfor women who do not drive."

DISCUSSION The qualitative themes from the first and second sets of focus groups helped to establish the foundation and direction of the cultural intervention stratVOL. 92, NO. 3, MARCH 2000

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egies for the Witness Project®. The Witness Project® used the cultural issues as intervention strategies to encourage more women to get mammograms, as well as clinical breast examinations, pelvic exams, and Pap tests, and to conduct breast self-examinations. Although focus group data may not be directly generalizable to the entire sampled population and the fact that thematic and pattern analyses may vary from one researcher to another, using a qualitative research strategy such as focus groups provides a unique opportunity to obtain detailed information on the cultural beliefs associated with breast cancer among African-American women. For example, the Witness Project® used three major themes from the qualitative data to develop their culturally competent community-based program: 1. One's health is the responsibility of the individual; 2. Address the "fatalism" concept-survivors demonstrated that cancer is not a death sentence; and 3. Remove the "stigmatization" of cancer-speaking in public helps.

These issues were addressed and then incorporated into the Witness Project® messages. In particular, by sharing their individual cancer experiences, the Witness Role Models helped to dispel many of the fatalistic concepts and fears of cancer and also provided women with specific information to better negotiate the local health care system. The intervention increased women's knowledge and reduced fears about cancer and encouraged women to seek breast cancer information. In addition, the qualitative data highlighted the importance of spirituality, the cultural trust factor within social and cultural groups, and the intraethnic preference of role models. These factors helped to create the Witness Role Models and Lay Health Advisors. The outcome of the cultural interventions resulted in the increased numbers of African-American women getting a mammogram as compared to similar women in control groups.29 In fact, of those who completed a follow-up survey, 67% of the women had a mammogram since they participated in the Witness Project® program.28,29 Moreover, all of these women stated that JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION

they would be willing to have their mammogram at the next scheduled visit. The qualitative cultural data along with the quantitative outcome data illustrate the interrelationship that cultural beliefs and patterns have with mammography utilization. If evaluated and used properly, the once perceived cultural barriers associated with African Americans can actually be used as a cultural intervention strategy to improve mammography, utilization. The Witness Project® is one of several outreach breast cancer programs that has successfully implemented the use of cultural beliefs and patterns to improve mammography utilization for African-American women.

ACKNOWLEDGMENTS We thank Marilynn Fulton, Regina Shoate, Mattye Willis, Charlie Stayton, Regina Tausan, and Debbie Jackson for technical support and their insightful advice in the preparation of this manuscript.

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