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Advanced Cancer in Underserved Populations
Seminars in Oncology Nursing, Vol 26, No 3 (August), 2010: pp 157-167
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ADVANCED CANCER IN UNDERSERVED POPULATIONS MARGARET BARTON-BURKE, EBONY SMITH, JUDITH FRAIN, AND CASSANDRA LOGGINS OBJECTIVES: To discuss three contextual factors related to advanced cancer: socioeconomic status, race and racism, and religion and spirituality. DATA SOURCES: Published qualitative research, quantitative research, journal articles.
CONCLUSION: A diagnosis of advanced cancer in marginalized individuals means that people are diagnosed much later, do not have the social, political, and economic capital available to deal with the diagnosis, have more serious complications, and their quality of life is compounded by unequal quality of care.
IMPLICATIONS TO NURSING PRACTICE: Examples are provided of successful evidenced-based strategies that can be extrapolated by nurses to a cancer population. KEY WORDS: Advanced cancer, health disparities, socioeconomic status, racism, religion. ‘‘The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at moments of challenge and controversy.’’ Rev Dr Martin Luther King Jr1
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HE CAUSES of cancer health disparities result from complex interactions between individual factors (eg, genetic endowment, perceptions, beliefs, health behaviors, culture, diet), social and economic Margaret Barton-Burke, PhD, RN: Mary Ann Lee Endowed Professor of Oncology Nursing, University of Missouri - St. Louis; and Nurse Researcher, Siteman Cancer Institute, St. Louis, MO. Ebony Smith, MPH: Project Coordinator, Black Women Breast Cancer Survivor Project, St. Louis, MO. Judith Frain, RN, MSN: Research Assistant and Doctoral Student, College of Nursing, University of Missouri - St. Louis, St. Louis, MO. Cassandra Loggins, MSN, RN: Adjunct Faculty, College of Nursing, University of Missouri - St. Louis, St. Louis, MO.
factors (eg, racism, discrimination, social marginalization, education levels, and socioeconomic status [SES]), environmental factors (eg, neighborhood conditions, exposure to toxic environments), and availability of quality health care (eg, access to health care, utilization of care, and provision of care).2-19 This article reviews the multifaceted and complex context of the lives for the poor, the old, the oppressed, those lacking adequate housing Funded by the Susan G. Komen for the Cure Foundation (grant no. DISP 0707596), and The Mary Ann Lee Endowment in Oncology Nursing, Des Lee Collaborative Vision, University of Missouri - St. Louis, St. Louis, MO. Address correspondence to Margaret Barton-Burke, PhD, RN, College of Nursing, University of Missouri St. Louis, One University Boulevard, St. Louis, MO 63121. e-mail: [email protected] Ó 2010 Elsevier Inc. All rights reserved. 0749-2081/2603-$32.00/0. doi:10.1016/j.soncn.2010.05.003
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and insurance, and the means to survive a cancer diagnosis. A diagnosis of advanced cancer in marginalized individuals means that people are diagnosed much later, do not have the social, political, and economic capital available to deal with the diagnosis, have greater treatment complications, and their quality of life is compounded by unequal quality of care.13-15,17 This article focuses attention on our understanding of advanced cancer within a changing US population, in particular, SES, race and racism, and religion and spirituality, as contextual factors related to advanced cancer. Additionally, examples of evidenced-based strategies that have been used successfully are presented and could be extrapolated to a cancer population.
nosed in people regardless of race, class, or ethnic groups. However, marginalized members of society bear an unequal burden when diagnosed with cancer. They fall into the larger category of those with health disparities. The terms ‘‘health disparities,’’ ‘‘health care inequalities,’’ and ‘‘reduced access to health care’’ are euphemisms for racism and discrimination for vulnerable and high-risk populations. Their disparities may be that they are poor, speak a different language, and maintain non-Eurocentric traditions when it comes to health care, in general, and cancer, specifically. Advanced cancer affects vulnerable members of our society at a disproportionate rate and in different ways and we hope to shed some insight into this sociopolitical health care dilemma.
BACKGROUND The United States (US) is more diverse than ever before and by 2050 it is predicted that the population will be older and only half will be considered white. The greatest growth is expected among Latino and Asian populations.20,21 Along with this change in population comes a change in cancer epidemiologic statistics. For example, African Americans have high rates of mortality from cancer.3,5,6,10-14,22-25 African Americans have the highest death rate from colon and rectal cancer of any racial and ethnic group in the US, and only 33% of these cancers are detected at a localized stage. Latinos/Hispanics have higher incidence and death rates from stomach cancer compared with non-Hispanic whites. Cancer is becoming the leading cause of death for Alaska Native women and is the second leading cause of death among all other Native men and women. Native Hawaiians have the highest mortality rates in the nation for cancers of the corpus uteri and stomach. Among Asian populations, Chinese Americans experience the highest mortality rate for liver cancer, Filipinos have a higher incidence and mortality from thyroid cancer, and Vietnamese women have a 21⁄2 times higher cervical cancer incidence rate. The Filipinoand Vietnamese-specific cancer rates, respectively, are higher than for any other ethnic group. Finally, the Appalachian region of the US has a higher mortality rate for all cancers than the US as a whole.20-25 Cancer is diagnosed in rich and poor people alike. It is found in the young and old, employed or unemployed, insured or uninsured, and is diag-
CONTEXT OF ADVANCED CANCER: SES, RACE AND RACISM, AND RELIGION Socioeconomic Status Several reports, including ‘‘Unequal Treatment’’ in 2003 and the recent work by the Agency for Healthcare Research and Quality, are similar in their findings that SES factors into the equation of cancer care disparities.5,19,22,23,25 Where one lives, one’s zip code, and insurance status have become proxies for SES26-29 and the effects of SES are largest in marginalized and disenfranchised members of our society. Reducing these health disparities requires interventions at all levels of the SES hierarchy. Yet research findings regarding this SES hierarchy are equivocal. Some studies suggest that SES drives health disparities more than minority status.28-31 Other studies conclude that minorities are diagnosed at later stages more often than majority populations, and that the method of diagnosis varies by race.6,14,23,24,32 Studies have shown that even after adjusting for SES variables, stage of diagnosis is statistically significant by race. Even when statistical models controlled for education and income, racial and ethnic differences remained significant.14,29,31 Just as socioeconomic research increased our understanding of the disparities dilemma, the new terminology of ‘‘social determinants’’ and ‘‘socioeconomic position’’ (SEP) adds to our understanding about SES factors. Social determinants are related to education, income, or where
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TABLE 1. The Impact that Poverty and Being Poor have on Cancer, Health Care, and Health Cancer Poor people are more likely to die of cancer than non-poor, in part because of the lack of quality health care Lack of evidence to base therapeutic interventions because the population is not included in clinical trials Health Care Many poor people who have encountered rejections or shame when accessing health care services avoid contact and are slow to trust even well-meaning health care professionals Some providers curtail services to the poorest communities because of concerns about staff safety Most health care or specialized services are geographically remote from where poor people live Lack of transportation for clinic appointments: public transportation may not be available or may not be an option Power imbalances Patients and their family members may lack the social, economic, and political capital to understand how to navigate the health care system Poor people who obtain health care usually do so without the benefit of long-term relationship with a primary care provider or case manager who can help them navigate a complex care delivery system and who knows them as a human being with a life story Patients are asked to make treatment decisions without sufficient information about the implications of the decisions and the context of the patient–provider relationship Obtaining and using health insurance are barriers to accessing health care Poor people and their families make extraordinary sacrifices to pay for health care Health Health care goals may be difficult to assess if cognitively or drug impaired Unstable or unsafe housing with inadequate basic facilities (phone, private bathroom, refrigerator, and cooking facilities) Fragile or non-existent support systems (no primary caregiver, caregiver who is unstable to provide necessary care, caregiver is also sick, no surrogate or proxy decision-maker, estranged from family, history of family violence or abuse) Behavioral problem such as drug use, substance abuse, or selling illegal substances, hostility, and psychiatric illness may affect relationship with health care providers and available care Data from references.5, 22-26, 35-37
one lives, whereas SEP refers to social class.30 The most frequently used dimensions of SEP are education, social class, occupation, housing characteristics, and wealth. SEP is predictive of many risk exposures considered to be social determinants of health. For example, higher education theoretically provides a better job with a higher income and benefits, one major benefit being health insurance and, consequently, health care. Recent work by Williams et al31 and Gehlert et al33 suggest that social and physical environments influence behavioral, physiological, and genetic interactions. Their work is innovative and forwardthinking – looking at the development of advanced cancer from the cellular level to the community level. These researchers are seeking alternative explanations by looking at ‘‘upstream’’ determinants (eg, social factors such as neighborhoods, housing, SES, and discrimination), and by developing ‘‘downstream’’ interventions that are outside the health care system. These interventions may reduce the incidence of illness and the disparities in health. Some interventions decrease social isolation or stress while partnering with the community.
Whether the correct term is SES, social determinant, or SEP, is not as important as the implication that poverty impacts health. According to the World Health Organization, poverty is the leading cause of ill health and mortality around the world. In 2004, 37 million Americans, or 12.7% of the population, were living in poverty; this trend is increasing and affecting the well-being of individuals, families, and communities.34-37 A recent study has shown that people living in poorer areas are less likely to have adequate pain management and are less likely to be hospitalized for common illnesses.34 Recognition of the relationship between poverty, poor neighborhoods, and cancer is not new. Freeman and others have been addressing these issues for almost two decades.37,38 Poor neighborhoods exist in inner cities and rural parts of the United States. Table 1 highlights the role that poverty plays in cancer, health care, and health. The correlation between poverty and health exists because poverty influences lifestyle choices, access to safe housing conditions, healthy foods,
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educational attainment, and health care.32,35,39-42 Between 1968 and 1978, a ‘‘war on poverty’’ in the US was declared by the Federal government. During that time, hospitals were desegregated; Medicaid and food stamp programs became part of the anti-poverty initiative. There was an income gap decline between the races and African American men and women, ages 35 to 74, had a larger relative and absolute decline in mortality compared with white men and women.18,43 Today, there are other reasons that poverty contributes to health disparities. When someone is poor, that individual is faced with decisions of whether to pay bills, buy groceries, or seek needed medical attention. Individuals who are making an hourly wage may still be unable to afford time away from work or other responsibilities to address health issues. Low wage or hourly positions usually do not come with health insurance benefits. Research findings show that health disparities, although influenced by socioeconomic conditions, persist even in the presence of health insurance; people in minorities receive less care than others for the same condition, and the care received is of lower quality.2,3,5,9-12,19,22-25,31,44,45 Lack of insurance, coupled with the fact that some people with cancer are underinsured, sets the stage for individuals being diagnosed with advanced cancer. African Americans and Hispanics tend to experience a lower quality of health care services, and individuals who are uninsured or underinsured are at increased risk of having advanced stage cancers at diagnosis.12,14,22,23,25,28,31,42,44,45 It is difficult to discern the impact of race, ethnicity, and SES in treatment and survival. Numerous studies indicate that race, ethnicity, and the type of health insurance are predictors of the quality of cancer treatment. Hispanics are more likely than any other ethnic group to be uninsured, increasing their risk of receiving inadequate care.44,45 Several studies highlight variables of insurance type, stage of diagnosis, and type of treatment,11,12,14,23,28,31,42,44,45 indicating correlations between advanced cancer, the treatment given, and insurance status (including being uninsured or underinsured). Gender and age must be considered when discussing SES. There are reports that minority women are less likely to have health insurance and tend to have lower educational levels and lower incomes.4,28,44,45 Studies have shown that women newly enrolled in Medicare at the time of
their diagnosis are significantly more likely to be diagnosed with late-stage disease than those enrolled months before their diagnosis.4,44 Women who enrolled in Medicaid in the month of their diagnosis were three times more likely to present with late-stage disease. Odds of late-stage diagnosis or unknown stage at diagnosis increased as neighborhood SES decreased.44 Women insured with Medicaid were less likely to receive appropriate treatment when compared with women with other types of insurance.11,12,31,44,45 Finally, increased age is associated with late stage at diagnosis of cervical cancer because older women are less likely than younger women to get screening Pap tests.4,44 The type of cancer care facilities and insurance status are predictors of treatment-related outcomes. Teaching hospitals are an important provider of quality care for the uninsured and medically underserved. One study evaluated teaching hospitals and found that insurance coverage did not affect chemotherapy treatment, but Black, non-Hispanic women were 42% less likely to receive therapy than White nonHispanic women, making race the important factor in this research. This was compared with non-teaching hospitals where patients receiving Medicare were less likely to receive chemotherapy and Hispanic women were 42% less likely to receive adjuvant therapy than white nonHispanic women.45 Race and Racism Race and racism are quite often the lens through which minorities view the world, despite the fact that race is a social construct, a taxonomy, developed in 1758 by Carolus Linnaeus. Linnaeus’s student, J.F. Bluemenbach, shifted race from a taxonomy to ranked groupings based on worth, and from that point forward studies of biological difference between the ‘‘races’’ were frequently coupled with pejorative and racists terms. The eugenics movement of the late 19th and early 20th centuries perpetuated this racism.46-51 The discussion about race and racism is not limited to African Americans, American history, and/or slavery. Latin America has a history of injustice and exploitation. Latin Americans have historically been oppressed by centuries-old colonialism, rape of women, and forced ownership and enslavement of children.51-54 Additionally, immigrants and refugees who flee war-torn
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TABLE 2. Examples of ‘‘isms’’ That Can Affect One’s Worldview Racism-related events including neighborhoods, work environments and education, law enforcements, and being harassed or rejected because of skin color Vicarious racism where one experiences the prejudice and discrimination that happened to a close friend or family member Daily racism that manifests as preconscious/unconscious degradation and putdowns (such as in the form of being ignored while waiting in line or an ‘‘off color’’ remark) Chronic racism has its impact on social structures, including liquor stores on every corner and their influence on the distribution of economic resources within a community Collective experiences where one is affected by observing how racism affects others with whom they feel a strong connection Transgenerational transmission of traumas such as slavery and discrimination affects the community Status-related biases such as ageism, classism, heterosexism, sexism, religious, and disability discrimination Institutional racism where minority patients are more likely to receive aggressive diagnostic work-ups and less aggressive treatment for chronic health conditions Data from.5, 19, 22, 23, 25, 55
countries such as Sudan, Rawanda, Eastern Europe, and Southeastern Asia may view their world through this same lens. Our research from the Black Women Breast Cancer Survivor (BWBCS) Project8 provides evidence in the form of narratives about African American women who work without insurance, work to pay down credit card debt, and buy homes. Our research illustrates how close many African American women are to becoming poor if they are diagnosed with a catastrophic illness such as cancer, and how people become ‘‘enslaved’’ to systems of money like credit cards, cash advances, and pay day loans (a type of usury with interest rates near 40%). Americans are living on the margin of making it one day and losing everything the next. The word ‘‘enslaved’’ is used repeatedly during several interviews.8 According to Harrell,55 racism can traumatize, hurt, humiliate, enrage, confuse, and ultimately prevent optimal growth and functioning of individuals and communities. Table 2 presents other ‘‘isms’’ that affect one’s view of his or her world and compound contextual factors. The unethical practices perpetrated by medical researchers toward African American men with syphilis in the notorious Tuskegee study
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continues to loom large in the African American community. Thirty-seven years after the Tuskegee study ended, it plays a role in shaping public and community attitudes toward research in black communities and is seen by many as one of the reasons for the lack of participation in research and clinical trials.56 Other barriers to participation include negative feelings toward clinical trials, mistrust of the medical and research fields, fear of treatment, and costs. This fear comes from a lack of knowledge and a distrust of the medical community.
Spirituality and Religion as a Resource If race and racism is the lens through which individuals may view the world, then religion and spirituality become the background of many individuals’ lives. By spirituality and religion, we are not speaking of any specific religion embraced by particular ethnic, racial, or disenfranchised group. Rather, we offer an awareness that individuals and their views of religion and spirituality are complex and nuanced and that are different for different religions and belief systems. Yet major religious traditions help give meaning when life is tough. Religion is one of the main resources used to make sense of lives filled with oppression, racism, and poverty. Religion helps to give meaning to life by highlighting how God, Allah, or a spiritual other guides one’s life. Religion has been described as a means of coping, which may serve as a framework for understanding the impact of spirituality in the lives of vulnerable populations with advanced cancer.57-61 Spirituality is based on a personal relationship with God or a higher power/being, not dependent on church attendance or church affiliation, and not limited by one’s ability to physically attend church.60 Religion and spirituality offer existential perspectives and can provide a means of coping, sources of strength, healing, hope, and can help individuals find meaning in their cancer experience.58-61 For African Americans, the church holds a historical and special place in the community. It serves to define values, is a house of worship, is a place to meet and socialize, and is a place to receive messages about heath care.62 Religion and health beliefs are often linked with one another. In our research with the BWBCS Project, we saw acceptance of life events as a reflection of
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TABLE 3. A Sample of Evidenced-based Culturally Relevant Measures of Success Program
Target
Outcomes/Conclusions
The Witness Project
Volunteers deliver cancer education and screening programs to African American women Breast and cervical cancer screening for African American women
Faith-Based Program69,70
Intervention to control chronic disease. In this study diabetes was the chronic disease but the model could be used as a cancer intervention Support groups for African American and black women diagnosed and treated for breast cancer
Goal is to increase awareness, knowledge, and motivation resulting in an increase in screening and early detection behaviors There is an increase in screening mammography reported African American congregations are an effective model for diffusion of health promotion messages
66-68
The Olive Branch of Hope Spiritwise Sisters Voices of Victory Black Women Breast Cancer Survivors Project Relational Research71-75 Anticipatory Care Model76
Community-based and/or Health Professional Navigation Programs Black Women Breast Cancer Survivor Project77-79
Nurse Family Partnership Program (NFP)80
Medical-Legal Partnership81
Moving to Opportunity (MTO) Yonkers, NY city-wide-deconcentration of public housing82,83
Increased engagement with patients as co-producers of health Proactive practice-based case findings Follow-up with an emphasis on servicing a certain population area Long-term relationship building between patients and providers Programs to provide individualized attention and guidance for patients and their key supports by assisting with scheduling, providing transportation, coordinating care, facilitating communication, financial support, and follow-up Intervention to improve prenatal and pregnancy outcome for adolescents and minority youth but could be used as a cancer intervention This model uses lawyers on the medical team in Boston, MA On-site lawyers are integrated into specialty physicians practices and patients are referred by the physicians to the lawyers Program targets a pediatric population Low-income, mostly minority families, are moved to less poor neighborhoods
Culturally appropriate and culturally sensitive support groups for African American and black women with cancer The support group approach for women of color provides an environment where women can discuss their fears, their lives, and their issues in a safe place This proactive approach has been effective in reducing smoking rates, other health measures, and mortality among men in South Wales, UK
Patient navigation programs provide a promising strategy for providing culturally tailored programs that may eliminate disparities in screening and early detection for diverse communities
Although intervention targets pregnancyrelated outcomes, this model could be used for diffusion of health promotion messages Not rigorously studied or evaluated Premise of the model is that high proportion of low- and moderateincome families face serious legal challenges that adversely affect quality of life and management of chronic conditions Mental health improved 3 years after the move Lower levels of crime victimization reported Reports of better overall health, less substance abuse, less exposure to violence than those who did not move Higher employment rates, higher satisfaction with public transportation, recreational facilities, and medical care were reported
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TABLE 3. Continued Program Chicago’s Center for Interdisciplinary Health Disparities Research (CIHDR)33,40
National Breast and Cervical Cancer Early Detection Program (NBCCEDP)44
Target Upstream determinants linked to downstream interventions where a vertical chain beginning at the top with socioeconomic factors have causal links to isolation, depression, stress (hormone), ending in tumor development Provide screenings to low-income women who are uninsured or underinsured Programs in all 50 states, District of Columbia, 4 US territories, and 13 American Indian/Alaska native tribes Reimbursement capped at Medicare rates
deeply held religious beliefs rather than fatalism; this is supported in the literature.63 In one study, older African American adults had higher subjective religiosity and religious behavior scores than white older adults.58 Self-directing African American women preferred to keep control of their health and have limited contact with the health care system.64 Self-directing African American women may not take advantage of early screenings for cancer, thereby keeping control of their health by limiting use of health care services. This may explain why some African American women refuse chemotherapy and radiation treatments for cancer and some of the disparity in survival rates of cancer even when access to care is not a confounding factor. By contrast, the Islamic population in the US is growing rapidly, and African American Muslim women are distinctly different from their Christian counterparts in regard to their religious beliefs and practices. Although the two religions are distinctly different, there are similarities, including a strong reliance on spirituality as a source of strength in times of trouble. For African American Muslim women with advanced cancer, any intervention or treatment should
Outcomes/Conclusions Model uniquely demonstrates the important links between determinants from the cellular level to the community level
As of June 2003, more than 2 million women have been screened through this program According to the NBCCEDP guidelines, Pap tests should be extended to every 3 years after three negative tests in a row Health care providers not following guidelines: Fear of losing patients to follow-up if not seen yearly Fear of misclassifying risk factors placing a high-risk patient into extended screening category NBCCED programs need to be affiliated with institutions that can be used for follow-up should that be needed
address the spiritual needs as well as the Western health care framework based on body–mind dualism. The implications for practice are enormous. In addition to prayer and fasting tenets of the Muslim religion, other religious restrictions may prevent women from participating in cancer screenings, may contribute to later diagnosis, and the refusal of treatment and follow-up.65 Finally, in a qualitative study by Bacchus and Holley,64 the authors investigate the role of spirituality as a coping strategy in the lives of 10 professional black women. These findings suggest that the use of spirituality as a coping strategy is not limited to the poor, uneducated, and vulnerable. Professional, well-educated, financially secure African American women rely on their faith in God to sustain them in times of trouble. It validates the importance of spirituality in the lives of all African Americans in general.
PROGRAMS THAT WORK Several reports describe elements that are essential to design interventions to address cancer prevention, cancer control, and survivorship
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TABLE 4. Considerations from Intercultural Cancer Council on Cultural Competence Cultural Communications Learn the common verbal and nonverbal ways of communication, such as shaking hands, looking the patient in the eye, how far to sit or stand from the patient, and the use of touch Health care professionals represent sources of authority. Clinician should allow the patient to avoid eye contact as a way of showing respect. Some cultures consider direct eye contact with authority figures rude and do not share this form of nonverbal communication Begin clinical visits by addressing the adult patient by titles such as Mr, Mrs, or Ms. Calling an adult patient by his or her first name demonstrates lack of respect and is demeaning When communicating with Latino/Hispanic families, ‘‘respecto’’ (respect) must be conveyed at first to the father, then to the mother, then to the other older adults, and finally to the older and younger children. Informal use of language will also increase the level of suspicion and sharpen defenses Out of a sense of respect many Latino/Hispanic and Asian patients may avoid disagreeing or even asking the simplest questions Cancer Communications Most indigenous languages do not include a word for ‘‘cancer,’’ making a discussion about a cancer diagnosis quite difficult Specialists advise replacing the word ‘‘cancer’’ with ‘‘health,’’ such as ‘‘breast health screening’’ The notion of prevention and early detection may not be understood if one’s cultural group thinks of only symptom and symptom management. For example, antibiotics are taken for a given number of days. If an individual begins to feel better they may stop taking their medication as prescribed. Conversely, taking a chemotherapy that makes an individual feel sick may have adverse effects on their treatment Some patients and their families embrace the holistic approach to health. The use of tonics and herbs to strengthen resistance to disease and to improve overall health may be a barrier to cancer prevention and screening activities General Communications Be sensitive to patients’ religious and spiritual belief systems. ‘‘Faith in God’’ is a strong predictor of how African American patients handle the understanding and diagnosis of cancer. Muslim women must be covered and may need to have their husband with them during an examination Among the disadvantaged, such as the rural poor living in Appalachia, educational attainment, literacy, and functional literacy are often barriers to cancer care. Not understanding what the health care professional is talking about during a clinic visit may contribute to some patients feeling ashamed about their literacy level and, therefore, not admitting that they do not understand what is being said or what is in print Using plain language, defining the terms used in cancer care, and employing educational tools such as videos and DVDs to facilitate patient understanding among this population group -
Data from reference 22: (http://www.iccnetwork.org).
among vulnerable populations. Included among them are reports describing how interventions could be designed to ensure that they were appealing, acceptable, appropriate, and responsive to the perspectives, preferences, and practices of vulnerable groups. This work describes tailoring interventions to ensure that they were culturally, linguistically, and literacy-appropriate for use among racially and/or ethnically diverse groups. Table 3 offers a small sampling of successful programs that could work in underserved communities. Community-based participatory research (CBPR) assures that populations and communities that would benefit from or be affected by research can participate in and influence decision-making about the research, meanwhile building community relationships based on mutual respect and trust. The relationships must be nurtured and sustained through ongoing partnerships, shared
decision-making, and the development of outreach and education programs that are responsive to community-identified concerns. CBPR and programming efforts work, especially if respected members of the communities being served are involved in planning, implementing, and evaluating a program, as well as writing up the reports and publications.
CONCLUSION The Intercultural Cancer Council set realistic goals and an action plan for racial and ethnic minorities, for those living in rural areas, for older adults, and the poor, and described in the 2nd edition of the ‘‘Pocket Guide - Cultural Competence in Cancer Care: A Health Care Professional’s Passport.’’22 These documents highlight the influences of culture, SES, and geography on health behaviors of the rural poor and the five largest
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racial/ethnic groups in the US. Table 4 provides initial steps that can be taken toward culturally competent care. The way health and health care is viewed needs to change. It is difficult to understand a context of dominance, oppression, racism, and stress if one is part of the majority group that provides structure to health care, hospitals and health care agencies, insurance companies and payors, and health care workers. These institutions, groups, and individuals make the policies, rules, and regulations for health and health care. A US task force identified domains that affect health and health care: 1) neighborhood living conditions; 2) opportunities for learning; 3) employment opportunities and community development; 4) prevailing norms, customs, and processes; 5) social cohesion; 6) civic engagement and collective efficacy; 7) health promotion, disease prevention, and health care opportunities.84 It is only through changing aspects of health care including access, payment, and the cultural sensitivity of providers that we
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might change the morbidity and mortality of advanced cancer. Currently, cancer care is based on a EuropeanAmerican model of understanding and treating the disease. To provide comprehensive, culturally sensitive health care, it is important to be knowledgeable about the nature and impact of cancer on the aspects of the changing demographics of the nation. Culture is presumed to influence individuals’ attitudes, beliefs, and behaviors regarding cancer prevention, risk management, and cancer care. There is a dearth of literature relating to the influence of ethnic identity, cultural affiliation, cultural heritage, acculturation, social organization, communication, religion, and spirituality on cancer-related morbidity and mortality. Future research needs to target the contextual factors specified in this article and other underlying issues to achieve the goal of eliminating disparities in cancer morbidity and mortality among all US population groups.
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21. US Census Bureau. Projections of the resident population by age, sex, race, and Hispanic origin: 1999 to 2100 (Middle Series). Washington, DC; US Census Bureau, population Program, Population Division [monograph online]. Available at: http://www.census.gov/population/www/projections/natsum. html. (accessed Nov 30, 2009). 22. Intercultural Cancer Council Sources. Cultural competence in cancer care: a health care professional’s passport. Washington, DC. Available at: http://www.iccnetwork.org. (accessed Dec 10, 2009). 23. Smedley BD, Stith AY, Nelson AR, eds. Unequal treatment: confronting racial and ethnic disparities in health care. Washington, DC: National Academies Press; 2002. 24. Centers for Disease Control and Prevention. Perspectives in disease prevention and health promotion report of the secretary’s task force on black and minority health. MMWR Morb Mortal Wkly Rep 1986;35:109-112. 25. National Healthcare Disparities Report 2007. Available at: http://www.ahrq.gov/qual/qrdr07.htm. (accessed June 15, 2008). 26. Schootman M, Fuortes LJ. Breast and cervical carcinoma: the correlation of activity limitations and rurality with screening, disease incidence, and mortality. Cancer 1999;86:1087-1094. 27. Schootman M, Jeffe DB, Lian M, et al. The role of poverty rate and racial distribution in the geographic clustering of breast cancer survival among older women: a geographic and multilevel analysis. Am J Epidemiol 2009;169:554-561. 28. O’Malley CD, Sherma SJ, Clarke LS. Medicaid status and stage at diagnosis of cervical cancer. Am J Public Health 2006;95:2179-2185. 29. Lantz PM, Mujahid M, Schwartz K, et al. The influence of race, ethnicity, and individual socioeconomic factors on breast cancer stage at diagnosis. Am J Public Health 2006;96:2173-2178. 30. Regidor E. Social determinants of health: a veil that hides socioeconomic position and its relation with health. J Epidemiol Commun Health 2006;60:896-901. 31. Williams DR, Costa MV, Odunlami AO, et al. Moving upstream: how interventions that address the social determinants of health can improve health and reduce disparities. J Public Health Manage Pract 2008;14(suppl):S8-S17. 32. Polite BN, Dignam JJ, Olopade OI. Colorectal cancer model of health disparities: understanding mortality differences in minority populations. J Clin Oncol 2006;24:2179-2187. 33. Gehlert S, Sohmer D, Sacks T, et al. Targeting health disparities: a model linking upstream determinants to downstream interventions. Health Affairs 2008;27:339-349. 34. Simms C, Persaud D. Global health and local poverty: rich countries’ responses to vulnerable populations. Can J Public Health 2009;100:176-179. 35. Hughes A. Poverty and palliative care in the US: issues facing the urban poor. Int J Palliat Nurs 2005;11:6-13. 36. Hughes A, Gudmundsdottir M, Davies B. Everyday struggling to survive: experiences of the urban poor living with advanced cancer. Oncol Nurs Forum 2007;34:1113-1118. 37. Freeman HP. Poverty, culture, and social injustice: determinants of cancer disparities. CA Cancer J Clin 2004;54:72-77. 38. Barnes C. The nature of social justice. In: de Chesnay M, ed. Caring for the vulnerable. Sudbury, MA: Jones and Bartlett; 2005: pp. 13-20. 39. Browning CR, Cagney KA. Moving beyond poverty: neighborhood structure, social processes, and health. J Health Soc Behav 2003;44:552-571.
40. Krieger N. Is breast cancer a disease of affluence, poverty, or both? The case of African American women. Am J Public Health 2002a;92:611-613. 41. Krieger N. Race, poverty, affluence, and breast cancer. Am J Public Health 2002b;92:1559. 42. Barry J, Breen N. The importance of place of residence in predicting late-stage diagnosis of breast or cervical cancer. Health Place 2005;11:15-29. 43. Bradley CJ, Neumark D, Shickle LM, et al. Differences in breast cancer diagnosis and treatment: experiences of insured and uninsured women in a safety net setting. Inquiry 2008;45:323-339. 44. Cooper CP, Saraiya M, McLean TA, et al. Pap test intervals used by physicians serving low-income women through the national breast and cervical cancer early detection program. J Women’s Health 2005;14:670-678. 45. Richardson LC, Tian L, Voti L, et al. The roles of teaching hospitals, insurance status, and race/ethnicity in receipt of adjuvant therapy for regional-stage breast cancer in Florida. Am J Public Health 2006;96:160-166. 46. Race, Ethnicity and Genetics Working Group. The use of racial, ethnic and ancestral categories in human genetics research. Am J Human Genet 2005;77:519-532. 47. Bonham VL, Knerr S. Social and ethical implications of genomics, race, ethnicity, and health inequities. Semin Oncol Nurs 2008;24:254-261. 48. Williams DR, Lavizzo-Mourey R, Warren RC. The concept of race and health status in America. Publ Health Rep 1994;109:26-41. 49. Kevles DJ. In the name of eugenics. New York: Knopf; 1985. 50. Washington HA. Medical apartheid: the dark history of medical experimentation on black Americans from colonial times to the present. New York: Harlem Moon; 2006. 51. Beozzo JO. Humiliated and exploited natives. In: Boff L, Elizondo V, eds. Concilium, the voice of the victims. London: SCM Press; 1990: pp. 78-89. 52. Boff L, Elizondo V, eds. Concilium, the voice of the victims. London: SCM Press; 1990. 53. de la Torre A, Estrada A. Mexican Americans and health. Tucson, AZ: University of Arizona Press; 2001. 54. Dussel E. The invention of the Americas: eclipse of ‘‘the other’’ and the myth of modernity (translated by Barber MD). New York: Continuum; 1995. 55. Harrell SP. A multidimensional conceptualization of racism-related stress: implications for the well-being of people of color. Am J Orthopsychiatry 2000;70:42-57. 56. Bacquet CR, Henderson K, Commiskey P, et al. Clinical trials: the art of enrollment. Semin Oncol Nurs 2008;24:262269. 57. Pargament K. The psychology of religion and coping: theory, research, practice. New York: Guilford Press; 1997. 58. Ark PD, Hull PC, Husaini BA, et al. Religiosity, religious coping styles, and health service use. J Gerontol Nurs 2006;32:20-29. 59. Gibson LM. Inter-relationships among sense of coherence, hope, and spiritual perspectives (inner resources) of African-American and European-American breast cancer survivors. Applied Nurs Res 2003;16:236-244. 60. Hamilton JB, Powe BD, Pollard AB, et al. Spirituality among African American cancer survivors. Cancer Nurs 2007;30:309-316.
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61. Abrums M. ‘‘Jesus will fix it after awhile’’: meaning and health. Soc Sci Med 2000;20:89-105. 62. Swinney JE. African Americans with cancer: the relationships among self-esteem, locus of control, and health perception. Res Nurs Health 2002;25:371-382. 63. Morgan PD, Tyler ID, Fogel J. Fatalism revisited. Semin Oncol Nurs 2008;24:237-245. 64. Bacchus DN, Holley LC. Spirituality as a coping resource: the experiences of professional black women. J Ethics Cultural Divers Social Work 2004;13:65-84. 65. Rajaram SS, Rashidi A. African-American Muslim women and health care. Women Health 2003;37:81-96. 66. Boyd AS, Wilmoth MC. An innovative community-based intervention for African American women with breast cancer: ‘‘The witness project.’’ Health Social Work 2006;31:77-80. 67. Erwin DO, Ivory J, Stayton C, et al. Replications and dissemination of a cancer education model for African American women. Cancer Control 2003;10:13-21. 68. Erwin DO, Spatz TS, Turturro CL. Development of an African-American role model intervention to increase breast self-examination and mammography. J Cancer Ed 1992;7: 311-319. 69. Hoyo C, Reid L, Hatch J, et al. Program prioritization to control chronic diseases in African-American faith-based communities. J Natl Med Assoc 2004;96:524-532. 70. Taylor EJ. Spiritual needs of patients with cancer and family caregivers. Cancer Nurs 2003;26:260-266. 71. King TC, Ferguson SA. ‘‘I am because we are’’: clinical interpretations of communal experience among African American women. Women Therapy 1996;18:33-45. 72. Michalec B, VanWilligen M, Wilson K, et al. The race gap in support group participation by breast cancer survivors. Evaluat Rev 2004;28:123-143. 73. Nelson J, Agyapong F. Women of colour living with breast cancer: the search for support. Can Women Studies 2004;24:167-172.
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74. Thomas VN. Cancer and minority ethnic groups: factors likely to improve nurse-patient communication and facilitate the delivery of sensitive care. J Cancer Nurs 1997;1: 134-140. 75. Barton-Burke M, Zucker D, Chandler G, et al. Relational research: an area for qualitative inquiry. Symposium presented at the International Conference on Qualitative Inquiry, Champagne/Urbana, IL, May 23, 2009. 76. Moorhead R. Hart of Glyncorrwg. J Res Soc Med 2004;97:132-136. 77. Nguyen T-UN, Kagawa-Singer M. Overcoming barriers to cancer care through health navigation programs. Semin Oncol Nurs 2008;24:270-278. 78. Freeman HP. Patient navigation: a community centered approach to reducing cancer mortality. J Cancer Ed 2006;21(suppl 1):S11-S14. 79. Barton-Burke M, Zucker D, Chandler G, et al. Relational research in vulnerable populations. Paper presented at the Eastern Nursing Research Society, Boston, MA, March 20, 2009. 80. Olds DL. Prenatal and infancy home visiting by nurses: from randomized trials to community replications. Prev Sci 2002;3:153-172. 81. Zuckerman B, Sandel M, Smith L, et al. Why pediatricians need lawyers to keep children healthy. Pediatrics 2004;114:224-228. 82. Acevado-Garcia D, Osypuk TL, Werbel RE, et al. Does housing mobility policy improve health? Housing Policy Debate 2004;15:49-98. 83. Fauth RC, Levanthal T, Brooks-Gunn J. Short-term effects of moving from public housing in poor-to middle-class neighborhoods on low-income, minority adults’ outcomes. Soc Sci Med 2004;59:2271-2284. 84. Anderson LM, Schrimshaw SC, Fullilove MT, et al. Task Force on Community Preventive Services. The community guide’s model for linking the social environment to health. Am J Prev Med 2003;24:12-20.
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ADVANCED CANCER IN UNDERSERVED POPULATIONS MARGARET BARTON-BURKE, EBONY SMITH, JUDITH FRAIN, AND CASSANDRA LOGGINS OBJECTIVES: To discuss three contextual factors related to advanced cancer: socioeconomic status, race and racism, and religion and spirituality. DATA SOURCES: Published qualitative research, quantitative research, journal articles.
CONCLUSION: A diagnosis of advanced cancer in marginalized individuals means that people are diagnosed much later, do not have the social, political, and economic capital available to deal with the diagnosis, have more serious complications, and their quality of life is compounded by unequal quality of care.
IMPLICATIONS TO NURSING PRACTICE: Examples are provided of successful evidenced-based strategies that can be extrapolated by nurses to a cancer population. KEY WORDS: Advanced cancer, health disparities, socioeconomic status, racism, religion. ‘‘The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at moments of challenge and controversy.’’ Rev Dr Martin Luther King Jr1
T
HE CAUSES of cancer health disparities result from complex interactions between individual factors (eg, genetic endowment, perceptions, beliefs, health behaviors, culture, diet), social and economic Margaret Barton-Burke, PhD, RN: Mary Ann Lee Endowed Professor of Oncology Nursing, University of Missouri - St. Louis; and Nurse Researcher, Siteman Cancer Institute, St. Louis, MO. Ebony Smith, MPH: Project Coordinator, Black Women Breast Cancer Survivor Project, St. Louis, MO. Judith Frain, RN, MSN: Research Assistant and Doctoral Student, College of Nursing, University of Missouri - St. Louis, St. Louis, MO. Cassandra Loggins, MSN, RN: Adjunct Faculty, College of Nursing, University of Missouri - St. Louis, St. Louis, MO.
factors (eg, racism, discrimination, social marginalization, education levels, and socioeconomic status [SES]), environmental factors (eg, neighborhood conditions, exposure to toxic environments), and availability of quality health care (eg, access to health care, utilization of care, and provision of care).2-19 This article reviews the multifaceted and complex context of the lives for the poor, the old, the oppressed, those lacking adequate housing Funded by the Susan G. Komen for the Cure Foundation (grant no. DISP 0707596), and The Mary Ann Lee Endowment in Oncology Nursing, Des Lee Collaborative Vision, University of Missouri - St. Louis, St. Louis, MO. Address correspondence to Margaret Barton-Burke, PhD, RN, College of Nursing, University of Missouri St. Louis, One University Boulevard, St. Louis, MO 63121. e-mail: [email protected] Ó 2010 Elsevier Inc. All rights reserved. 0749-2081/2603-$32.00/0. doi:10.1016/j.soncn.2010.05.003
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and insurance, and the means to survive a cancer diagnosis. A diagnosis of advanced cancer in marginalized individuals means that people are diagnosed much later, do not have the social, political, and economic capital available to deal with the diagnosis, have greater treatment complications, and their quality of life is compounded by unequal quality of care.13-15,17 This article focuses attention on our understanding of advanced cancer within a changing US population, in particular, SES, race and racism, and religion and spirituality, as contextual factors related to advanced cancer. Additionally, examples of evidenced-based strategies that have been used successfully are presented and could be extrapolated to a cancer population.
nosed in people regardless of race, class, or ethnic groups. However, marginalized members of society bear an unequal burden when diagnosed with cancer. They fall into the larger category of those with health disparities. The terms ‘‘health disparities,’’ ‘‘health care inequalities,’’ and ‘‘reduced access to health care’’ are euphemisms for racism and discrimination for vulnerable and high-risk populations. Their disparities may be that they are poor, speak a different language, and maintain non-Eurocentric traditions when it comes to health care, in general, and cancer, specifically. Advanced cancer affects vulnerable members of our society at a disproportionate rate and in different ways and we hope to shed some insight into this sociopolitical health care dilemma.
BACKGROUND The United States (US) is more diverse than ever before and by 2050 it is predicted that the population will be older and only half will be considered white. The greatest growth is expected among Latino and Asian populations.20,21 Along with this change in population comes a change in cancer epidemiologic statistics. For example, African Americans have high rates of mortality from cancer.3,5,6,10-14,22-25 African Americans have the highest death rate from colon and rectal cancer of any racial and ethnic group in the US, and only 33% of these cancers are detected at a localized stage. Latinos/Hispanics have higher incidence and death rates from stomach cancer compared with non-Hispanic whites. Cancer is becoming the leading cause of death for Alaska Native women and is the second leading cause of death among all other Native men and women. Native Hawaiians have the highest mortality rates in the nation for cancers of the corpus uteri and stomach. Among Asian populations, Chinese Americans experience the highest mortality rate for liver cancer, Filipinos have a higher incidence and mortality from thyroid cancer, and Vietnamese women have a 21⁄2 times higher cervical cancer incidence rate. The Filipinoand Vietnamese-specific cancer rates, respectively, are higher than for any other ethnic group. Finally, the Appalachian region of the US has a higher mortality rate for all cancers than the US as a whole.20-25 Cancer is diagnosed in rich and poor people alike. It is found in the young and old, employed or unemployed, insured or uninsured, and is diag-
CONTEXT OF ADVANCED CANCER: SES, RACE AND RACISM, AND RELIGION Socioeconomic Status Several reports, including ‘‘Unequal Treatment’’ in 2003 and the recent work by the Agency for Healthcare Research and Quality, are similar in their findings that SES factors into the equation of cancer care disparities.5,19,22,23,25 Where one lives, one’s zip code, and insurance status have become proxies for SES26-29 and the effects of SES are largest in marginalized and disenfranchised members of our society. Reducing these health disparities requires interventions at all levels of the SES hierarchy. Yet research findings regarding this SES hierarchy are equivocal. Some studies suggest that SES drives health disparities more than minority status.28-31 Other studies conclude that minorities are diagnosed at later stages more often than majority populations, and that the method of diagnosis varies by race.6,14,23,24,32 Studies have shown that even after adjusting for SES variables, stage of diagnosis is statistically significant by race. Even when statistical models controlled for education and income, racial and ethnic differences remained significant.14,29,31 Just as socioeconomic research increased our understanding of the disparities dilemma, the new terminology of ‘‘social determinants’’ and ‘‘socioeconomic position’’ (SEP) adds to our understanding about SES factors. Social determinants are related to education, income, or where
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TABLE 1. The Impact that Poverty and Being Poor have on Cancer, Health Care, and Health Cancer Poor people are more likely to die of cancer than non-poor, in part because of the lack of quality health care Lack of evidence to base therapeutic interventions because the population is not included in clinical trials Health Care Many poor people who have encountered rejections or shame when accessing health care services avoid contact and are slow to trust even well-meaning health care professionals Some providers curtail services to the poorest communities because of concerns about staff safety Most health care or specialized services are geographically remote from where poor people live Lack of transportation for clinic appointments: public transportation may not be available or may not be an option Power imbalances Patients and their family members may lack the social, economic, and political capital to understand how to navigate the health care system Poor people who obtain health care usually do so without the benefit of long-term relationship with a primary care provider or case manager who can help them navigate a complex care delivery system and who knows them as a human being with a life story Patients are asked to make treatment decisions without sufficient information about the implications of the decisions and the context of the patient–provider relationship Obtaining and using health insurance are barriers to accessing health care Poor people and their families make extraordinary sacrifices to pay for health care Health Health care goals may be difficult to assess if cognitively or drug impaired Unstable or unsafe housing with inadequate basic facilities (phone, private bathroom, refrigerator, and cooking facilities) Fragile or non-existent support systems (no primary caregiver, caregiver who is unstable to provide necessary care, caregiver is also sick, no surrogate or proxy decision-maker, estranged from family, history of family violence or abuse) Behavioral problem such as drug use, substance abuse, or selling illegal substances, hostility, and psychiatric illness may affect relationship with health care providers and available care Data from references.5, 22-26, 35-37
one lives, whereas SEP refers to social class.30 The most frequently used dimensions of SEP are education, social class, occupation, housing characteristics, and wealth. SEP is predictive of many risk exposures considered to be social determinants of health. For example, higher education theoretically provides a better job with a higher income and benefits, one major benefit being health insurance and, consequently, health care. Recent work by Williams et al31 and Gehlert et al33 suggest that social and physical environments influence behavioral, physiological, and genetic interactions. Their work is innovative and forwardthinking – looking at the development of advanced cancer from the cellular level to the community level. These researchers are seeking alternative explanations by looking at ‘‘upstream’’ determinants (eg, social factors such as neighborhoods, housing, SES, and discrimination), and by developing ‘‘downstream’’ interventions that are outside the health care system. These interventions may reduce the incidence of illness and the disparities in health. Some interventions decrease social isolation or stress while partnering with the community.
Whether the correct term is SES, social determinant, or SEP, is not as important as the implication that poverty impacts health. According to the World Health Organization, poverty is the leading cause of ill health and mortality around the world. In 2004, 37 million Americans, or 12.7% of the population, were living in poverty; this trend is increasing and affecting the well-being of individuals, families, and communities.34-37 A recent study has shown that people living in poorer areas are less likely to have adequate pain management and are less likely to be hospitalized for common illnesses.34 Recognition of the relationship between poverty, poor neighborhoods, and cancer is not new. Freeman and others have been addressing these issues for almost two decades.37,38 Poor neighborhoods exist in inner cities and rural parts of the United States. Table 1 highlights the role that poverty plays in cancer, health care, and health. The correlation between poverty and health exists because poverty influences lifestyle choices, access to safe housing conditions, healthy foods,
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educational attainment, and health care.32,35,39-42 Between 1968 and 1978, a ‘‘war on poverty’’ in the US was declared by the Federal government. During that time, hospitals were desegregated; Medicaid and food stamp programs became part of the anti-poverty initiative. There was an income gap decline between the races and African American men and women, ages 35 to 74, had a larger relative and absolute decline in mortality compared with white men and women.18,43 Today, there are other reasons that poverty contributes to health disparities. When someone is poor, that individual is faced with decisions of whether to pay bills, buy groceries, or seek needed medical attention. Individuals who are making an hourly wage may still be unable to afford time away from work or other responsibilities to address health issues. Low wage or hourly positions usually do not come with health insurance benefits. Research findings show that health disparities, although influenced by socioeconomic conditions, persist even in the presence of health insurance; people in minorities receive less care than others for the same condition, and the care received is of lower quality.2,3,5,9-12,19,22-25,31,44,45 Lack of insurance, coupled with the fact that some people with cancer are underinsured, sets the stage for individuals being diagnosed with advanced cancer. African Americans and Hispanics tend to experience a lower quality of health care services, and individuals who are uninsured or underinsured are at increased risk of having advanced stage cancers at diagnosis.12,14,22,23,25,28,31,42,44,45 It is difficult to discern the impact of race, ethnicity, and SES in treatment and survival. Numerous studies indicate that race, ethnicity, and the type of health insurance are predictors of the quality of cancer treatment. Hispanics are more likely than any other ethnic group to be uninsured, increasing their risk of receiving inadequate care.44,45 Several studies highlight variables of insurance type, stage of diagnosis, and type of treatment,11,12,14,23,28,31,42,44,45 indicating correlations between advanced cancer, the treatment given, and insurance status (including being uninsured or underinsured). Gender and age must be considered when discussing SES. There are reports that minority women are less likely to have health insurance and tend to have lower educational levels and lower incomes.4,28,44,45 Studies have shown that women newly enrolled in Medicare at the time of
their diagnosis are significantly more likely to be diagnosed with late-stage disease than those enrolled months before their diagnosis.4,44 Women who enrolled in Medicaid in the month of their diagnosis were three times more likely to present with late-stage disease. Odds of late-stage diagnosis or unknown stage at diagnosis increased as neighborhood SES decreased.44 Women insured with Medicaid were less likely to receive appropriate treatment when compared with women with other types of insurance.11,12,31,44,45 Finally, increased age is associated with late stage at diagnosis of cervical cancer because older women are less likely than younger women to get screening Pap tests.4,44 The type of cancer care facilities and insurance status are predictors of treatment-related outcomes. Teaching hospitals are an important provider of quality care for the uninsured and medically underserved. One study evaluated teaching hospitals and found that insurance coverage did not affect chemotherapy treatment, but Black, non-Hispanic women were 42% less likely to receive therapy than White nonHispanic women, making race the important factor in this research. This was compared with non-teaching hospitals where patients receiving Medicare were less likely to receive chemotherapy and Hispanic women were 42% less likely to receive adjuvant therapy than white nonHispanic women.45 Race and Racism Race and racism are quite often the lens through which minorities view the world, despite the fact that race is a social construct, a taxonomy, developed in 1758 by Carolus Linnaeus. Linnaeus’s student, J.F. Bluemenbach, shifted race from a taxonomy to ranked groupings based on worth, and from that point forward studies of biological difference between the ‘‘races’’ were frequently coupled with pejorative and racists terms. The eugenics movement of the late 19th and early 20th centuries perpetuated this racism.46-51 The discussion about race and racism is not limited to African Americans, American history, and/or slavery. Latin America has a history of injustice and exploitation. Latin Americans have historically been oppressed by centuries-old colonialism, rape of women, and forced ownership and enslavement of children.51-54 Additionally, immigrants and refugees who flee war-torn
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TABLE 2. Examples of ‘‘isms’’ That Can Affect One’s Worldview Racism-related events including neighborhoods, work environments and education, law enforcements, and being harassed or rejected because of skin color Vicarious racism where one experiences the prejudice and discrimination that happened to a close friend or family member Daily racism that manifests as preconscious/unconscious degradation and putdowns (such as in the form of being ignored while waiting in line or an ‘‘off color’’ remark) Chronic racism has its impact on social structures, including liquor stores on every corner and their influence on the distribution of economic resources within a community Collective experiences where one is affected by observing how racism affects others with whom they feel a strong connection Transgenerational transmission of traumas such as slavery and discrimination affects the community Status-related biases such as ageism, classism, heterosexism, sexism, religious, and disability discrimination Institutional racism where minority patients are more likely to receive aggressive diagnostic work-ups and less aggressive treatment for chronic health conditions Data from.5, 19, 22, 23, 25, 55
countries such as Sudan, Rawanda, Eastern Europe, and Southeastern Asia may view their world through this same lens. Our research from the Black Women Breast Cancer Survivor (BWBCS) Project8 provides evidence in the form of narratives about African American women who work without insurance, work to pay down credit card debt, and buy homes. Our research illustrates how close many African American women are to becoming poor if they are diagnosed with a catastrophic illness such as cancer, and how people become ‘‘enslaved’’ to systems of money like credit cards, cash advances, and pay day loans (a type of usury with interest rates near 40%). Americans are living on the margin of making it one day and losing everything the next. The word ‘‘enslaved’’ is used repeatedly during several interviews.8 According to Harrell,55 racism can traumatize, hurt, humiliate, enrage, confuse, and ultimately prevent optimal growth and functioning of individuals and communities. Table 2 presents other ‘‘isms’’ that affect one’s view of his or her world and compound contextual factors. The unethical practices perpetrated by medical researchers toward African American men with syphilis in the notorious Tuskegee study
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continues to loom large in the African American community. Thirty-seven years after the Tuskegee study ended, it plays a role in shaping public and community attitudes toward research in black communities and is seen by many as one of the reasons for the lack of participation in research and clinical trials.56 Other barriers to participation include negative feelings toward clinical trials, mistrust of the medical and research fields, fear of treatment, and costs. This fear comes from a lack of knowledge and a distrust of the medical community.
Spirituality and Religion as a Resource If race and racism is the lens through which individuals may view the world, then religion and spirituality become the background of many individuals’ lives. By spirituality and religion, we are not speaking of any specific religion embraced by particular ethnic, racial, or disenfranchised group. Rather, we offer an awareness that individuals and their views of religion and spirituality are complex and nuanced and that are different for different religions and belief systems. Yet major religious traditions help give meaning when life is tough. Religion is one of the main resources used to make sense of lives filled with oppression, racism, and poverty. Religion helps to give meaning to life by highlighting how God, Allah, or a spiritual other guides one’s life. Religion has been described as a means of coping, which may serve as a framework for understanding the impact of spirituality in the lives of vulnerable populations with advanced cancer.57-61 Spirituality is based on a personal relationship with God or a higher power/being, not dependent on church attendance or church affiliation, and not limited by one’s ability to physically attend church.60 Religion and spirituality offer existential perspectives and can provide a means of coping, sources of strength, healing, hope, and can help individuals find meaning in their cancer experience.58-61 For African Americans, the church holds a historical and special place in the community. It serves to define values, is a house of worship, is a place to meet and socialize, and is a place to receive messages about heath care.62 Religion and health beliefs are often linked with one another. In our research with the BWBCS Project, we saw acceptance of life events as a reflection of
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TABLE 3. A Sample of Evidenced-based Culturally Relevant Measures of Success Program
Target
Outcomes/Conclusions
The Witness Project
Volunteers deliver cancer education and screening programs to African American women Breast and cervical cancer screening for African American women
Faith-Based Program69,70
Intervention to control chronic disease. In this study diabetes was the chronic disease but the model could be used as a cancer intervention Support groups for African American and black women diagnosed and treated for breast cancer
Goal is to increase awareness, knowledge, and motivation resulting in an increase in screening and early detection behaviors There is an increase in screening mammography reported African American congregations are an effective model for diffusion of health promotion messages
66-68
The Olive Branch of Hope Spiritwise Sisters Voices of Victory Black Women Breast Cancer Survivors Project Relational Research71-75 Anticipatory Care Model76
Community-based and/or Health Professional Navigation Programs Black Women Breast Cancer Survivor Project77-79
Nurse Family Partnership Program (NFP)80
Medical-Legal Partnership81
Moving to Opportunity (MTO) Yonkers, NY city-wide-deconcentration of public housing82,83
Increased engagement with patients as co-producers of health Proactive practice-based case findings Follow-up with an emphasis on servicing a certain population area Long-term relationship building between patients and providers Programs to provide individualized attention and guidance for patients and their key supports by assisting with scheduling, providing transportation, coordinating care, facilitating communication, financial support, and follow-up Intervention to improve prenatal and pregnancy outcome for adolescents and minority youth but could be used as a cancer intervention This model uses lawyers on the medical team in Boston, MA On-site lawyers are integrated into specialty physicians practices and patients are referred by the physicians to the lawyers Program targets a pediatric population Low-income, mostly minority families, are moved to less poor neighborhoods
Culturally appropriate and culturally sensitive support groups for African American and black women with cancer The support group approach for women of color provides an environment where women can discuss their fears, their lives, and their issues in a safe place This proactive approach has been effective in reducing smoking rates, other health measures, and mortality among men in South Wales, UK
Patient navigation programs provide a promising strategy for providing culturally tailored programs that may eliminate disparities in screening and early detection for diverse communities
Although intervention targets pregnancyrelated outcomes, this model could be used for diffusion of health promotion messages Not rigorously studied or evaluated Premise of the model is that high proportion of low- and moderateincome families face serious legal challenges that adversely affect quality of life and management of chronic conditions Mental health improved 3 years after the move Lower levels of crime victimization reported Reports of better overall health, less substance abuse, less exposure to violence than those who did not move Higher employment rates, higher satisfaction with public transportation, recreational facilities, and medical care were reported
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TABLE 3. Continued Program Chicago’s Center for Interdisciplinary Health Disparities Research (CIHDR)33,40
National Breast and Cervical Cancer Early Detection Program (NBCCEDP)44
Target Upstream determinants linked to downstream interventions where a vertical chain beginning at the top with socioeconomic factors have causal links to isolation, depression, stress (hormone), ending in tumor development Provide screenings to low-income women who are uninsured or underinsured Programs in all 50 states, District of Columbia, 4 US territories, and 13 American Indian/Alaska native tribes Reimbursement capped at Medicare rates
deeply held religious beliefs rather than fatalism; this is supported in the literature.63 In one study, older African American adults had higher subjective religiosity and religious behavior scores than white older adults.58 Self-directing African American women preferred to keep control of their health and have limited contact with the health care system.64 Self-directing African American women may not take advantage of early screenings for cancer, thereby keeping control of their health by limiting use of health care services. This may explain why some African American women refuse chemotherapy and radiation treatments for cancer and some of the disparity in survival rates of cancer even when access to care is not a confounding factor. By contrast, the Islamic population in the US is growing rapidly, and African American Muslim women are distinctly different from their Christian counterparts in regard to their religious beliefs and practices. Although the two religions are distinctly different, there are similarities, including a strong reliance on spirituality as a source of strength in times of trouble. For African American Muslim women with advanced cancer, any intervention or treatment should
Outcomes/Conclusions Model uniquely demonstrates the important links between determinants from the cellular level to the community level
As of June 2003, more than 2 million women have been screened through this program According to the NBCCEDP guidelines, Pap tests should be extended to every 3 years after three negative tests in a row Health care providers not following guidelines: Fear of losing patients to follow-up if not seen yearly Fear of misclassifying risk factors placing a high-risk patient into extended screening category NBCCED programs need to be affiliated with institutions that can be used for follow-up should that be needed
address the spiritual needs as well as the Western health care framework based on body–mind dualism. The implications for practice are enormous. In addition to prayer and fasting tenets of the Muslim religion, other religious restrictions may prevent women from participating in cancer screenings, may contribute to later diagnosis, and the refusal of treatment and follow-up.65 Finally, in a qualitative study by Bacchus and Holley,64 the authors investigate the role of spirituality as a coping strategy in the lives of 10 professional black women. These findings suggest that the use of spirituality as a coping strategy is not limited to the poor, uneducated, and vulnerable. Professional, well-educated, financially secure African American women rely on their faith in God to sustain them in times of trouble. It validates the importance of spirituality in the lives of all African Americans in general.
PROGRAMS THAT WORK Several reports describe elements that are essential to design interventions to address cancer prevention, cancer control, and survivorship
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TABLE 4. Considerations from Intercultural Cancer Council on Cultural Competence Cultural Communications Learn the common verbal and nonverbal ways of communication, such as shaking hands, looking the patient in the eye, how far to sit or stand from the patient, and the use of touch Health care professionals represent sources of authority. Clinician should allow the patient to avoid eye contact as a way of showing respect. Some cultures consider direct eye contact with authority figures rude and do not share this form of nonverbal communication Begin clinical visits by addressing the adult patient by titles such as Mr, Mrs, or Ms. Calling an adult patient by his or her first name demonstrates lack of respect and is demeaning When communicating with Latino/Hispanic families, ‘‘respecto’’ (respect) must be conveyed at first to the father, then to the mother, then to the other older adults, and finally to the older and younger children. Informal use of language will also increase the level of suspicion and sharpen defenses Out of a sense of respect many Latino/Hispanic and Asian patients may avoid disagreeing or even asking the simplest questions Cancer Communications Most indigenous languages do not include a word for ‘‘cancer,’’ making a discussion about a cancer diagnosis quite difficult Specialists advise replacing the word ‘‘cancer’’ with ‘‘health,’’ such as ‘‘breast health screening’’ The notion of prevention and early detection may not be understood if one’s cultural group thinks of only symptom and symptom management. For example, antibiotics are taken for a given number of days. If an individual begins to feel better they may stop taking their medication as prescribed. Conversely, taking a chemotherapy that makes an individual feel sick may have adverse effects on their treatment Some patients and their families embrace the holistic approach to health. The use of tonics and herbs to strengthen resistance to disease and to improve overall health may be a barrier to cancer prevention and screening activities General Communications Be sensitive to patients’ religious and spiritual belief systems. ‘‘Faith in God’’ is a strong predictor of how African American patients handle the understanding and diagnosis of cancer. Muslim women must be covered and may need to have their husband with them during an examination Among the disadvantaged, such as the rural poor living in Appalachia, educational attainment, literacy, and functional literacy are often barriers to cancer care. Not understanding what the health care professional is talking about during a clinic visit may contribute to some patients feeling ashamed about their literacy level and, therefore, not admitting that they do not understand what is being said or what is in print Using plain language, defining the terms used in cancer care, and employing educational tools such as videos and DVDs to facilitate patient understanding among this population group -
Data from reference 22: (http://www.iccnetwork.org).
among vulnerable populations. Included among them are reports describing how interventions could be designed to ensure that they were appealing, acceptable, appropriate, and responsive to the perspectives, preferences, and practices of vulnerable groups. This work describes tailoring interventions to ensure that they were culturally, linguistically, and literacy-appropriate for use among racially and/or ethnically diverse groups. Table 3 offers a small sampling of successful programs that could work in underserved communities. Community-based participatory research (CBPR) assures that populations and communities that would benefit from or be affected by research can participate in and influence decision-making about the research, meanwhile building community relationships based on mutual respect and trust. The relationships must be nurtured and sustained through ongoing partnerships, shared
decision-making, and the development of outreach and education programs that are responsive to community-identified concerns. CBPR and programming efforts work, especially if respected members of the communities being served are involved in planning, implementing, and evaluating a program, as well as writing up the reports and publications.
CONCLUSION The Intercultural Cancer Council set realistic goals and an action plan for racial and ethnic minorities, for those living in rural areas, for older adults, and the poor, and described in the 2nd edition of the ‘‘Pocket Guide - Cultural Competence in Cancer Care: A Health Care Professional’s Passport.’’22 These documents highlight the influences of culture, SES, and geography on health behaviors of the rural poor and the five largest
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racial/ethnic groups in the US. Table 4 provides initial steps that can be taken toward culturally competent care. The way health and health care is viewed needs to change. It is difficult to understand a context of dominance, oppression, racism, and stress if one is part of the majority group that provides structure to health care, hospitals and health care agencies, insurance companies and payors, and health care workers. These institutions, groups, and individuals make the policies, rules, and regulations for health and health care. A US task force identified domains that affect health and health care: 1) neighborhood living conditions; 2) opportunities for learning; 3) employment opportunities and community development; 4) prevailing norms, customs, and processes; 5) social cohesion; 6) civic engagement and collective efficacy; 7) health promotion, disease prevention, and health care opportunities.84 It is only through changing aspects of health care including access, payment, and the cultural sensitivity of providers that we
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might change the morbidity and mortality of advanced cancer. Currently, cancer care is based on a EuropeanAmerican model of understanding and treating the disease. To provide comprehensive, culturally sensitive health care, it is important to be knowledgeable about the nature and impact of cancer on the aspects of the changing demographics of the nation. Culture is presumed to influence individuals’ attitudes, beliefs, and behaviors regarding cancer prevention, risk management, and cancer care. There is a dearth of literature relating to the influence of ethnic identity, cultural affiliation, cultural heritage, acculturation, social organization, communication, religion, and spirituality on cancer-related morbidity and mortality. Future research needs to target the contextual factors specified in this article and other underlying issues to achieve the goal of eliminating disparities in cancer morbidity and mortality among all US population groups.
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