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Keywords:

  • cultural assessment model;
  • cancer survivorship initiatives;
  • culturally sensitive environments;
  • minority participation;
  • pessimism;
  • underserved populations;
  • culture

Abstract

  1. Top of page
  2. Abstract
  3. The Divide: Limited Participation of Minorities in Cancer Survivorship
  4. Reaching Diverse Populations
  5. Strategies for Full Inclusion of Diverse Populations
  6. Providing Culturally Sensitive Environments
  7. Sustaining Participation in Cancer Survivorship Initiatives and Improved Quality of Life
  8. Conclusions
  9. REFERENCES

Currently, there is a “divide” between cancer survivorship initiatives and minority participation. The level of participation is nearly nonexistent in many cancer support and control initiatives. Cancer survivorship resources that facilitate access to treatment, psychosocial interventions, clinical trials, and research are key components to eliminating this divide. Differences in cancer results among minority populations are caused by several factors, including biologic reactions to environmental activities, socioeconomic status, perceived beliefs and notions of medical professionals, a lack of resources to participate in cancer support groups, and having personal contact with cancer survivors. Health professionals, advocates, and researchers hold the key to opening more opportunities for the improvement of cancer survivorship among minorities. The belief that “one size fits all” is unrealistic. These beliefs can influence participation in innovative clinical trials, decisions about treatment, emotional responses, and social support relationships. To help ensure participation in these programs, researchers and health workers must understand the role of social and psychosocial implications and results of the assessment, strategies, and sustainability that must be included in the development stage of any cancer support and survivorship initiatives. For this article, the authors examined mechanisms that can be used by cancer-control researchers and program staff to limit the divide between cancer survivorship initiatives and minority participation. They identified three strategies that must be used to address this divide effectively: the inclusion of minorities in clinical trials, intervention studies, treatment, and research programs; the development of culturally sensitive environments; and the ability to sustain minority participation. In summary, cancer survivorship includes many components that are developed individually and collectively to formulate sound strategies for including minorities in cancer-control initiatives. These programs should go beyond basic support groups and should include research studies, clinical trials, and alternative treatments for increasing cancer survival rates and quality of life among minorities. The divide can be addressed only through a proactive initiative that brings cancer survivorship initiatives and minority communities together in full partnership. Cancer 2005. © 2005 American Cancer Society.

Cancer survivorship is an area that has grown over the years to include the physical, psychosocial, and economic trials and tribulations of cancer diagnosis, treatment, and survival. The road to recovery includes many different points, such as treatment, clinical trials, and support groups, among others. However, the road is traveled differently depending on the individual's race/ethnicity, socioeconomic status, culture, gender, and age, etc. Survivorship is the cornerstone of cancer control with the objective of increasing the quality of life for cancer survivors. The development of the Office of Cancer Survivorship elevated the need and focus for research in this important area to impact cancer survivors and their families.1 Currently, approximately 3.3% of the U.S. population has survived cancer; this is roughly 8.9 million individuals. With regard to long-term cancer survivors, 60% of adults and 77% of children are surviving beyond 5 years after diagnosis.2 Cancer survivorship is very important, because nearly 43% of men and 38% of women will face the fear of a cancer diagnosis in their lifetime.3 In a recent article by Jemal et al.,4 the reported 5-year survival rates still were lower for African Americans (72%) compared with white women (89%). With the rise of cancer survivorship, stark inequalities and disparities remain. America's healthcare history long has been characterized by healthcare disparities among its minority populations. A disproportionate number of cancer deaths occur among minorities, particularly African Americans, who have a one-third greater risk of dying of cancer than their white counterparts.5, 6 The ethnic differences have been observed and now questions are beginning to arise about how to close the divide between diverse populations and their overall health status. The division encompasses aspects of the healthcare system that prevent the early detection and treatment of cancer among minority populations. It has been noted that we need renewed attention to monitoring, understanding, and actively seeking to eliminate racial and/or ethnic disparities in healthcare.7 Cancer survivorship resources, such as Sisters Network, Y-ME, and the Cancer Information Service, which facilitate access to early detection, treatment, psychosocial interventions, clinical trials, and research, are key components to closing this divide.

For the current report, we examined mechanisms that can be used by cancer-control researchers and program staff to close the divide. These mechanisms are interrelated with the sustainability of cancer survivorship through environmental and socioeconomic assessments as well as strategies that include culturally sensitive outreach/case finding, research participation, support group participation, and treatment regiments (Fig. 1). The key area for assessment is the identification of the cancer survivors' culture. Cultural backgrounds differ among African Americans, Hispanics, Native Americans, and Asian Americans. The initial assessment must focus directly on the cancer survivors' diverse cultural attributes, which affect their behavior and participation. In addition, these access points collectively must consider the role of the cancer survivor's environment and overall socioeconomic status. The resources that an individual has to enable their participation include income, social support, transportation, insurance, etc.

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Figure 1. This chart illustrates culturally relevant access points of cancer survivorship. QoL: quality of life.

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Specifically, cancer survivorship can be characterized by several elements of an individual's being, including his or her race and ethnicity. For example, recent reports indicate that African-American women are likely to have more advanced cancer at the time of diagnosis than their white peers. However, poorer stage-specific survival rates also are evident among black women compared with the survival rates among white women.4, 8–10 These statistics indicate a need for participation in clinical trials and intervention studies, which are part of cancer survivorship; the support and testimonials provided by minority patients to others can facilitate minority participation in cancer survivorship programs. Differences in cancer survivorship among minority populations may be a result of several factors, including biologic reactions to environmental activities, socioeconomic status, perceived beliefs and notions about medical professionals, a lack of resources to reach cancer support groups, and having personal contacts with cancer survivors. Health professionals, advocates, and researchers hold the key to accessing more opportunities for the improvement of cancer survivorship among minorities.

Most agree that more research is needed on exactly how this can be done. The American Cancer Society maintains that data should reiterate the need for medical researchers to establish trusting relations with minorities and to conduct their research in an ethical manner.2 Empowering various underrepresented populations to become involved in this research, to participate in support programs, and to be available to receive health education is only the beginning of a multifaceted approach to improving the survivorship and quality of life of minority cancer patients. In this article, we have not addressed the key cultural attributes of minority populations, because there is published research in this area.11–13 However, this report does provide information about the tools and paradigms needed to address these disparities using a proactive approach.

The Divide: Limited Participation of Minorities in Cancer Survivorship

  1. Top of page
  2. Abstract
  3. The Divide: Limited Participation of Minorities in Cancer Survivorship
  4. Reaching Diverse Populations
  5. Strategies for Full Inclusion of Diverse Populations
  6. Providing Culturally Sensitive Environments
  7. Sustaining Participation in Cancer Survivorship Initiatives and Improved Quality of Life
  8. Conclusions
  9. REFERENCES

What is the divide? The divide is the disconnect between current cancer survivorship initiatives and minorities. It is a simple analysis that requires significant attention and culturally sensitive programs. The limited participation of racial and ethnic minorities in cancer survivorship initiatives must be addressed within a context that recognizes that there are initiatives that can be implemented to solve the problem. Figure 2 illustrates a process to address the divide by conducting the culture assessment model, which includes the role of documenting the cancer survivor's definition of self compared with the health professional's assessment. For example, an analysis of specific social support, psychosocial interventions, research, and clinical trials proves that there is less minority participation in cancer-control initiatives.6, 14–16 The involvement of minority cancer patients in psychosocial interventions will facilitate their adjustment to cancer. Research has shown that resilience is important in the development of cancer patients and their quality of life. Psychosocial interventions must address the social environment of minorities that facilitates their access and participation in cancer-control programs.17

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Figure 2. This chart illustrates the cancer survivorship culture assessment model.

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Experts contend that attitudes and beliefs are influenced largely by culture. Cultural beliefs regarding cancer facilitate the divide. Therefore, the need for cancer-control providers to assess their cancer survivorship programs critically in relation to the participation of minorities will allow them to develop culturally sensitive interventions. Research shows that cultural beliefs directly affect cancer control.18 A lack of resources and limited access to prevention and early detection programs facilitate the division in cancer survivorship. The belief that “one size fits all” (that one program works for everybody) is unrealistic. Cultural beliefs can influence participation in clinical trials, decisions about treatment, emotional responses, and social support relationships. To help ensure participation in these programs, researchers and health workers must understand the social and psychosocial implications and results of the assessment, strategies, and sustainability that must be included in the development stage of any cancer-control initiative. This requires work that must be performed at all levels of administration and program development.

Individuals from diverse racial and ethnic minority groups face substantial barriers, including medical practices that differ from their own beliefs and traditions, fear and mistrust of healthcare institutions, transportation, and a lack of knowledge about how to navigate the healthcare system.19–21 These barriers can lead to difficulties in scheduling an appointment, misunderstandings between clinicians and patients, misdiagnoses, and poor follow-through on the patient's part. However, is it the patient or the system that must understand the cultural differences and how they affect participation in cancer-control initiatives?

Perceptions regarding cancer and illness vary among different groups within each population. The determination and acceptance of these perceptions from minority cancer survivors enhances their level of participation in the cancer survivorship initiative. For example, a patient's family member may request that a physician not tell the patient that he or she has cancer. This is because some populations view cancer as a terminal disease. A suitable way to handle such a request is to enlighten patients about the truth and to work with the entire family on the cultural implications of addressing treatment. The postdiagnosis stage presents an opportunity to address cultural differences among minority populations. Research has documented a lack of participation among minorities in social support initiatives.22–24 Figure 2 provides avenues that must be addressed to facilitate access and participation of minorities in cancer support interventions. The keys to their participation are factors that affect their awareness, relevancy, and acceptability. All of these areas must include surface, informed, and critical assessments in the conceptualization of cancer support initiatives. Surface assessment deals with the initial biases that the patient has with regard to his or her personal idea of what cancer is and is not as well as the patient's trust in the healthcare system. Informed assessment plays a role in correcting misguided perceptions about cancer survivorship and strengthening positive perceptions. Critical assessment deals with the actual process of the patient dealing with cancer survivorship and its relevance to his or her everyday life. Minorities, like majority populations, must fell that their participation is valued in a culturally sensitive environment.

Reaching Diverse Populations

  1. Top of page
  2. Abstract
  3. The Divide: Limited Participation of Minorities in Cancer Survivorship
  4. Reaching Diverse Populations
  5. Strategies for Full Inclusion of Diverse Populations
  6. Providing Culturally Sensitive Environments
  7. Sustaining Participation in Cancer Survivorship Initiatives and Improved Quality of Life
  8. Conclusions
  9. REFERENCES

Understanding culturally biased responses to cancer is important for healthcare workers and researchers.25, 26 An exploration of culturally determined beliefs depends on the definition of cultural boundaries and the appropriate methods that are used to identify those beliefs. Diversity can encompass many factors relating to the disparities in health for citizens in the U.S. Socioeconomic status is identified as a central determinant of racial and ethnic disparities in health, but various other factors—including medical care, geographic location, migration, acculturation, racism, stress, and the availability of resources—also play a role. Research and data have shown the need for renewed attention to monitoring, understanding, and actively seeking to increase diverse populations in cancer-control activities.27, 28 Information plays one of the most important roles in increasing participation. However, information must be provided in a culturally sensitive manner. Research has shown that many cancer-control materials are insensitive culturally, and cultural beliefs of minority populations are not addressed.13, 29–32

There are three strategies that must be used to address this divide effectively: the inclusion of minorities in cancer survivorship programs, the development of culturally sensitive environments, and the ability to sustain minority participation (Fig. 3). These three strategies are described below in detail with examples for implementation in cancer survivorship initiatives.

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Figure 3. This chart illustrates three strategies to address the divide between cancer survivorship initiatives and minority participation.

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Strategies for Full Inclusion of Diverse Populations

  1. Top of page
  2. Abstract
  3. The Divide: Limited Participation of Minorities in Cancer Survivorship
  4. Reaching Diverse Populations
  5. Strategies for Full Inclusion of Diverse Populations
  6. Providing Culturally Sensitive Environments
  7. Sustaining Participation in Cancer Survivorship Initiatives and Improved Quality of Life
  8. Conclusions
  9. REFERENCES

The recruitment of diverse populations into cancer prevention and control studies has presented researchers and cancer-control professionals with a major challenge. Scientific findings may not be appropriate or applicable to ethnic minority populations unless minorities are represented sufficiently as study participants. In general, previous culturally relevant recruitment has been insufficient in adequately increasing participation in cancer survivorship initiatives.33–35 The consensus appears to be that leaving cultural competency out of healthcare will send minority populations a step backward. In fact, the key is to take cultural competency beyond simple training and awareness by incorporating an approach that systematically addresses the disparities and the divide.

The following implementation strategies will ensure the full inclusion of diverse populations in cancer control: 1) Assess the racial and ethnic backgrounds of your target populations related to their perceptions regarding cancer treatment, social support networks, and information about ways to develop or promote the cancer survivorship initiative. 2) Ensure that racial and ethnic minorities and the medically underserved become a significant part of each organization's long-term agenda. 3) Design and create specific intervention programs that target minority and medically underserved cancer survivors by using indigenous populations to serve as advocates. 4) Seek to extend medical transportation and other supportive services that will facilitate access. 5) Collaborate with community groups to provide foreign-language translators and language education for healthcare providers who work with minority patients. Health professionals, advocates, and researchers must involve communities as active participants in developing healthy environments that will give members of the community the skills and abilities to develop strategies that will lead to actions that prevent disease and death in racial and ethnic minorities.

Providing Culturally Sensitive Environments

  1. Top of page
  2. Abstract
  3. The Divide: Limited Participation of Minorities in Cancer Survivorship
  4. Reaching Diverse Populations
  5. Strategies for Full Inclusion of Diverse Populations
  6. Providing Culturally Sensitive Environments
  7. Sustaining Participation in Cancer Survivorship Initiatives and Improved Quality of Life
  8. Conclusions
  9. REFERENCES

Once you have facilitated access to the minority populations, the next major step is to ensure that you are providing a culturally sensitive environment. This is an important part of assuring a patient's continued participation in and level of comfort with your initiative. Culturally sensitive environments must address barriers to diverse populations participating in cancer survivorship programs, including fear, hopelessness, pessimism, fatalism, and a distrust of the healthcare system. Many current advocacy programs focus on educating the health professional and the patient without addressing the patient's cultural environment. More important, quality-of-life issues must include diverse environmental factors that facilitate the patient's access and continued participation in medical care services.36, 37 To eliminate barriers that impede minorities' access to adequate healthcare services, cancer survivorship programs should adopt the following strategies: 1) Initiate cultural competency training curricula of all health professions. The curriculum should be a general overview of cultural issues for all racial and ethnic groups, but it should be focused specifically on the culture of the dominant minority group(s) in the particular geographic area. 2) Include racially and ethnically diverse investigators and practitioners to increase participation in research and treatment. 3) Ensure the dissemination of cancer information to minority populations in a linguistically and culturally sensitive form and format. 4) Implement culturally sensitive messages from the start of a program. Little progress can be made if cancer-control programs are presented to a minority community without first seeking to understand and appreciate the culture. 5) Use committees composed of representatives from the minority community and focus groups to test the waters regarding cultural sensitivity and acceptance of cancer-control services.

The realization that minorities have a lack of trust and feel a hopelessness toward cancer and the healthcare system must be addressed in the social environment. Preplanning and program-development activities that include minorities in the development of those activities can facilitate a trusting environment. Medical professionals and organizations should realize that they may work with staff members who are insensitive to racial and ethnic differences or that they may work in environments that serve as major barriers to participation by minorities.

Sustaining Participation in Cancer Survivorship Initiatives and Improved Quality of Life

  1. Top of page
  2. Abstract
  3. The Divide: Limited Participation of Minorities in Cancer Survivorship
  4. Reaching Diverse Populations
  5. Strategies for Full Inclusion of Diverse Populations
  6. Providing Culturally Sensitive Environments
  7. Sustaining Participation in Cancer Survivorship Initiatives and Improved Quality of Life
  8. Conclusions
  9. REFERENCES

The empowerment of cancer-control professionals and minority individuals can help to sustain effective participation in cancer survivorship initiatives. Collective ownership is the key to addressing barriers to cancer survivorship. Medical professionals and organizations need to recognize that there are many issues among minority populations. Cancer-control health professionals and researchers must be cognitive of these issues, which go far beyond basic resilience. Healthcare workers should receive training and development to recognize that sustained inclusion of minorities in cancer survivorship initiatives will affect patients' psychosocial, clinical, physical, and mental capacities to survive the disease, which equals improvement in their quality of life.38–40

Further research is needed to investigate factors or incentives that may increase fidelity among minority cancer survivors.41, 42 Some of the strategies may include: 1) collaborating with all entities that provide cancer treatment services to minority racial and ethnic populations (together, treatment providers can focus their efforts on striking a balance between the initiatives so that they can address the health needs of various communities); 2) implementing culturally appropriate outreach and interventions that are accessible to minority populations (i.e., providing services through community health centers, churches, and schools); 3) identifying minority community-based organizations or voluntary organizations that work in diverse communities to build a network linkage within the community that offers supportive services in nontraditional settings; and 4) developing capacity-building skills to empower minorities to serve as role models in the community and within your organization.

The key to sustainability is providing patients with an accessible and culturally sensitive environment for the long haul. The limited focus and time of programs in the community have created a lack of trust in major cancer institutions and local programs. Minority communities recognize that they are used for research studies or “quick fix” prevention programs by organizations that need them to participate to fulfill quotas. For cancer survivorship initiatives to be effective, they must be ready to serve minority communities for extended periods. The building of community partnerships for collaboration will allow effective development and sustainment of cancer survivorship initiatives and will decrease the divide.

Conclusions

  1. Top of page
  2. Abstract
  3. The Divide: Limited Participation of Minorities in Cancer Survivorship
  4. Reaching Diverse Populations
  5. Strategies for Full Inclusion of Diverse Populations
  6. Providing Culturally Sensitive Environments
  7. Sustaining Participation in Cancer Survivorship Initiatives and Improved Quality of Life
  8. Conclusions
  9. REFERENCES

Interventions in healthcare alone will not eliminate social inequalities in health.43, 44 The health of minority populations, to a large extent, is an outcome of their location, which incorporates historic, geographic, sociocultural, economic, and political contexts. There are many minority-based cancer survivor groups that successfully are reaching their targeted population. However, these groups represent only a small percentage of programs that successfully support and retain racial and ethnic minority cancer survivors. Cancer survivorship initiatives must include many individual and collective components that contribute to the development of sound strategies to include minorities in cancer-control and treatment programs. These programs should go beyond basic support groups and should include research studies, clinical trials, and alternative treatments to increase cancer survival rates among minorities. The divide can be closed only through a proactive initiative that brings cancer survivorship initiatives and minority communities together in a full partnership.

REFERENCES

  1. Top of page
  2. Abstract
  3. The Divide: Limited Participation of Minorities in Cancer Survivorship
  4. Reaching Diverse Populations
  5. Strategies for Full Inclusion of Diverse Populations
  6. Providing Culturally Sensitive Environments
  7. Sustaining Participation in Cancer Survivorship Initiatives and Improved Quality of Life
  8. Conclusions
  9. REFERENCES