Barriers to breast cancer control for African-American women
The interdependence of culture and psychosocial issues
This study evaluates the cultural context of the behaviors and beliefs of African-American women to determine the success or failure of breast cancer prevention and control interventions. Cultural and psychologic reactions, such as fear, distrust, fatalism, and other “historic rooted” factors, are major determinants to participation in these interventions by African-American women.
Psychosocial and cultural issues were delineated through a literature review in the areas of cancer prevention, breast cancer control, and African-American women. Assessments were conducted to document key successful models and activities that increased the participation of African-American women in breast cancer prevention and control interventions. Current community-based intervention strategies and activities were assessed.
Effective breast cancer prevention and control programs must address and develop cultural competent models that promote behavioral change in this population of women.
Studying the relationship between culture and psychosocial issues is integral to our understanding of how African-American women participate and respond to cancer prevention and control interventions. Cultural competent models that reduce and eliminate cancer disparities in this population must be developed. Cancer 2003;97(1 Suppl):318–23. © 2003 American Cancer Society.
An analysis of the roles of psychosocial and cultural issues as they relate to breast cancer control for African-American women addresses many variables. The issues are not monolithic and many divergent determinants must be included in a comprehensive assessment. The role of culture includes the norms, values, beliefs, language, and systems that affect an individual's overall behavior.1 Even though progress has been made in the areas of cancer prevention, detection, treatment, and palliation, the mere thought of cancer evokes visions of pain, mutilation, suffering, and death among African-American women.2–4
The belief that breast cancer is a “white women's” disease must be dispelled among African-American women if mortality rates are to be reduced. Breast cancer is the most common cancer among African-American women. Although the incidence rate of newly diagnosed breast cancer cases is 13% lower among African-American women compared with white women, the role of culture or its impact has not been evaluated fully as one of the factors that may contribute to an increase in mortality rates among African-American women.5
The 5-year survival rate for African-American women with breast cancer is 71% compared with 86% for white women.5 What is the reason for this 15% difference? Eley et al.6 reported that the stage of cancer at diagnosis, specific characteristics of the tumor, the presence of other illness, and sociodemographic factors account for 75% of the racial disparity between African-Amercian and white women.
About 5800 deaths from breast cancer are expected to occur among African-American women in 2001. Breast cancer death rates among African-American women increased at a modest rate for many years and have leveled off at approximately 31 per 100,000.5 Even though the death rate has been improving among, African-American women, they still have a 28% higher death rate compared with white women. Some experts believe that the later stage of disease at diagnosis and the likelihood of being diagnosed with estrogen receptor-negative tumors or more difficult-to-treat aggressive tumors may account for the higher death rate among African-American women.7 Consequently, fear, hopelessness, pessimism, and fatalism prevail among African-American women and negatively influence breast screening and early detection.
Role and Importance of Culture for African-American Women
The cultural context of the behaviors and beliefs of African-American women must be evaluated to determine the success or failure of breast cancer prevention and control strategies. The critical issue of defining “African-American women” takes center stage. Health professionals and researchers must look beyond the hues of skin color to their ancestral beginnings away from American shores. These women's self-identification of their ancestral and cultural ties may be allied closely to the geographic area of the world in which they or their parents grew up, such as the Caribbean, Central America, or Africa. These ancestral and cultural ties significantly impact how an individual views the world, behaves, and sees oneself. African-American women practice and integrate behaviors and beliefs from many cultures. Therefore, interventions for reducing morbidity and mortality rates from breast cancer among African-American women must be designed with these factors in mind.8, 9
African-American women or women of African descent encompass a diverse set of values, attitudes, beliefs, religions, lifestyles, geographic origins, linguistics, age, level of acculturation, and socioeconomic status. African-American women are not a homogeneous group with the same norms, attitudes, and beliefs, nor do they all believe the same myths. They are socially, economically, culturally, and ethnically diverse. Although there is as much heterogeneity among these women as there is among women of other ethnic groups, there remains a set of shared beliefs, values, and experiences that researchers should understand when evaluating the importance of culture in breast cancer prevention and control. Cancer prevention and control strategies targeted to African-American women must include messages about breast cancer that are consistent with their beliefs, attitudes, and experiences.10
African-American women share positive attitudes about strong kinship bonds, the flexibility of roles in the family, and connectivity to religion, education, and work.9 These attitudes and beliefs can be traced back to African culture in which the survival of the tribe was viewed as primary and to the shared experience of slavery in this country.8 The bond of kinship was the center of tribal life, whereas slavery and institutional racism provide a sense of bonding between individuals. Consequently, “we are, therefore, I am” underlies a shared belief in strong kinship bonds and reflects an intratribal sense of survival of a collective unity drawn from a common beginning.9 Reliance on a kinship network or extended family not drawn along blood lines remains a major way of coping with interpersonal matters and external environmental pressures. Extended family bonds provide significant financial and emotional support. The extended family, comprised of a large number of uncles, aunts, big mamas, boyfriends, girlfriends, older brothers and sisters, deacons, preachers, and others, is a supportive family structure for many women of African descent in general and of African-American women in particular.11 This can be traced, in part, to the experience of the African village and to the various ways in which African-Americans responded to the assault on the family that slavery introduced. The bonds of the extended family often are critical to these women when confronted with making personal health decisions, including cancer screening, diagnosis, and treatment.
Role of Psychosocial and Cultural Risk Factors in Breast Cancer Control
To address the role of culture and psychosocial issues that affect African-American women, we must address the following key psychosocial and cultural issues: fear, distrust, fatalism, anxiety, faith in God, lack of empowerment, real or perceived racial discrimination, putting one's family needs above one's own needs, the role of the extended family, and various other factors.12 Other psychosocial and cultural beliefs and barriers that influence breast cancer screening behaviors and the late stage of diagnosis for this population include breast cancer is a white woman's disease, injury to the breast and toxins in the blood cause breast cancer, air causes cancer to spread, the devil can cause a person to develop cancer, and chiropractic treatments are effective against cancer.13–15
Addressing the fear and the perceived risk for cancer are key factors in increasing the participation of African-American women in breast cancer prevention and control activities. The role of perception is an important intervening psychosocial barrier for cancer control that affects decision-making. In addition, specific variables include silence and a distrust of the system. Many causes of silence among these women are reflected in the “persona” of not exploring the “unknown,” i.e., they believe that what is not addressed will not happen or eventually will disappear.16, 17 The cultural milieu from which these psychosocial issues arise affects the choices that African-American women make and their level of participation in breast cancer control programs.1, 18 Significantly, risk communication plays an important role in the way that women in general and, more specifically, in the way that African-American women perceive breast cancer risk. African-American women do not make decisions in a vacuum. Instead, they make decisions based on the role of family and the needs of family members, which are factored into the role of perceived risk communication.19–21 The decision to participate in any type of health care program rests on the role of risk and how it will affect the family. The art of pretense and denial as illustrated in the concept of “not knowing” provide various levels of false comfort for some African-American women as they continue their daily activities. Therefore, clinical risks are not internalized as personal risks. This lack of internalization affects directly the participation of African-American women in breast cancer control activities.
Key Cultural/Psychosocial Issues in Successful Community-Based Education and Screening Programs
Although many health promotion programs have been directed at African-American women in the past, few have been designed specifically to address cultural and psychosocial factors. For example, traditionally, health education or counseling is conducted in a clinical setting in an office, clinic, or hospital. However, many African-American women living in economically deprived areas seek medical attention only for acute problems. Their main concerns revolve around the more immediate issues of daily living. Therefore, it is unlikely that women living in such conditions will seek out a doctor for information on preventive health care and early detection of breast cancer.22–24 Traditional health education methods (e.g., tailored messages from physicians and strategies directed to physicians encouraging referral for screening mammography) have not produced substantial results in African-American communities. Innovative and atypical strategies are needed to encourage participation among African-American women. Community-based breast cancer control interventions that consider cultural and psychosocial issues, such as norms and barriers to screening among minority populations, can deliver the health message and promote behavioral change in this population.22–25
One approach for delivering messages about health promotion to minority populations has been to use specially trained members of the target population to provide group and/or one-on-one health education. This strategy is common in developing countries and in community-based organizations in this country where such personnel are known as health promoters or village health workers. These specially trained individuals — who are also referred to as lay health educators, lay health advisors, or lay health workers — can effectively deliver preventive health care information to their peers. The lay health workers, educators, and advisors serve as mediators between the community and health agencies, establish a social network, act as a resource, and offer social support to those in the community. Several community-based programs have utilized lay health advisors.26–35
Four community-based interventions worth noting include the Save Our Sisters Project, the North Carolina Breast Cancer Screening Program, Su Vida Su Salud, and the Witness Project. To address the psychosocial factors of fear, denial, the lack of participation in the health care system, and the lack of knowledge related to breast cancer control, these programs have used African-American women in the community to serve as lay health advisors to increase breast cancer awareness, promote early detection, and increase mammography screening among other African-American women. These programs positively influenced breast cancer screening behavior in their target populations.34, 35 The impact of interventions that attend to the cultural and psychosocial aspects delivered by local lay health advisors reveals that using community women in these lay roles has significant potential. Lay health workers often share a common background with the women in the community and they understand and experience economic and social circumstances similar to those faced by other African-American women in the community.33–35 In addition, lay health education programs provide personalized care and support that are normally not offered by traditional health education service programs.
Low-income African-American women primarily are concerned with immediate economic and societal needs. Health is a priority only when they become very ill. Once perceived as barriers, culture and psychosocial factors can be addressed to assist in the improvement of breast cancer screening initiatives designed for African-American women.23, 27, 28
Implications of Psychosocial/Cultural Issues: the Role of Empowerment
Psychosocial and cultural risk factors are further complicated by the experiences that African-American women have with the health system. The lack of sensitivity among health care providers and variations in the treatment provided to minorities lead to a feeling of a lack of empowerment and helplessness among African-American women. Culturally sensitive and relevant health care providers can facilitate access to competent and compassionate cancer care.36–39 Keys to addressing some of these psychosocial and cultural issues are inherent in evaluating the concept of empowerment. Empowering African-American women may overcome many of the psychosocial and cultural barriers and encourage their participation in their self-care. The use of lay health workers has increased empowerment, reduced traditional barriers, and improved the patient–provider relationship. The involvement of lay health workers facilitates the participation of African-American women in prevention and treatment activities, as well as their individual and collective efforts in eliminating barriers of distrust, fatalism, and fear associated with breast cancer prevention and control.40
Empowerment, as a personal enhancement, assists and underscores the attributes of African-American women in regards to social support. Social support provides role modeling and the kinship needed to confront the fear associated with breast cancer control. In addition, empowerment, along with culturally sensitive information, may assist African-American women in the decision-making process, which can increase their participation in breast cancer prevention and control activities. For example, the development of cancer education materials targeting African-American women must be culturally relevant. Studies have found that cancer education prevention materials have not been culturally sensitive to African Americans and readability levels are not appropriate.38, 39 These potential confounding factors hinder the participation of African-American women in breast cancer control initiatives.
Recommendations for Future Research
The relationship between culture and psychosocial issues must be further researched to ascertain and understand how African-American women participate and respond to cancer prevention and control messages, as well as to intervention strategies.12 To reduce morbidity and mortality rates in this ethnic group, comprehensive information must be collected and new models must be developed and implemented. This information and these models must focus on beliefs and attitudes about and experiences with the health care delivery system, sexual expression and sexuality, and relationships with significant others, as well as self-esteem and empowerment issues.
We must explore ways to incorporate and evaluate a variety of psychosocial and cultural models that can be put into practice using multifaceted interventions targeting African-American women. To achieve these goals, we recommend that health care providers and researchers
- 1Initiate research that evaluates the long-term effectiveness and dissemination of successful interventions and models that increase African-American participation in breast cancer control.
- 2Design and implement research that evaluates the role of empowerment and its impact on African-American women and their participation in breast cancer control and prevention. This research should focus on delineating key factors that empower some African-American women to participate in breast cancer control activities.
- 3Conduct research to find variations and similarities in the many cultures within the African-American community.
- 4Identify the contributions of existing and new theoretic models in explaining the breast cancer screening behaviors of African-American women.
- 5Develop and/or expand conceptual models to include factors such as interconnectedness, spirituality, and experiences of African-American women.
- 6Develop innovative interventions targeting younger African-American women, breast cancer survivors, and other high-risk African-American women.
- 7Determine the cost-effectiveness and feasibility models for replication of successful breast cancer screening interventions targeting African-American women across the life span.
Researchers in cancer care must look beyond statistics and current explanations for additional factors impeding the reduction of survival and death rates for African-American women with breast cancer. Keys to reducing morbidity and mortality rates among African-American women with breast cancer may lie in the role of culture and its impact on their behavior, value, and belief systems.
Research opportunities to design, plan, and implement interventions and models with culturally appropriate methods aimed at reducing the breast cancer burden borne by African-American women must be created. These opportunities include the future training of health care professionals and researchers committed to a significant reduction of breast cancer among African-American women by 2010.