Overcoming Barriers to Cancer Care Through Health Navigation Programs

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Seminars in Oncology Nursing, Vol 24, No 4 (November), 2008: pp 270-278

OBJECTIVES: To provide an overview of theoretical concepts in community-based, culturally tailored health navigation programs that have improved access to health care for ethnic minority populations, particularly for Asian Americans and Pacific Islanders.

DATA SOURCES: Published articles, reports, book chapters, government documents, research findings.

CONCLUSION: Community-based patient navigation interventions provide promising strategies for providing culturally tailored programs that are more likely to succeed in eliminating cancer disparities in screening and early detection of cancers for diverse cultural communities.

OVERCOMING BARRIERS TO CANCER CARE THROUGH HEALTH NAVIGATION PROGRAMS

IMPLICATIONS FOR NURSING PRACTICE: Nurses need to be more involved in developing and delivering effective, culturally competent communitybased cancer screening and treatment navigation programs through education, practice, research, and policy improvement.

KEYWORDS: Community health navigation, Asian Americans and Pacific Islanders, Cancer disparities, Culturally tailored programs

Tu-Uyen Ngoc Nguyen, PhD, MPH: Assistant Professor, Asian American Studies, California State University Fullerton (CSUF), Fullerton, CA. Marjorie Kagawa-Singer, PhD, RN, MN: Professor, School of Public Health and Asian American Studies Department, University of California Los Angeles (UCLA), Los Angeles, CA. Address correspondence to Tu-Uyen Nguyen, PhD, MPH, CSUF Asian American Studies, PO Box 6868, Fullerton, CA 92834-6868; e-mail: [email protected]

Ó 2008 Published by Elsevier Inc. 0749-2081/08/2404-$30.00/0 doi:10.1016/j.soncn.2008.08.007

TU-UYEN NGOC NGUYEN AND MARJORIE KAGAWA-SINGER

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HE 2002 Institute of Medicine report, ‘‘ Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care,’’1 noted that racial and ethnic minorities tend to receive lower quality of health care than non-minorities, even when access-related factors such as patients’ health insurance status and income are controlled. The report’s recommendations highlighted the development of ‘‘cultural competence’’ as part of a comprehensive effort to address racial and ethnic disparities in health.1 Likewise, the Commonwealth Fund Report published ‘‘Diverse Communities, Common Concerns: Assessing Health Care Quality for Minority Americans.’’2 This report found that minority Americans fared worse than whites on measures looking at effective patient–physician communication, overcoming cultural and linguistic barriers, and access to health insurance. In particular, minorities were more likely to feel that they were treated with disrespect when obtaining health care, and many felt that they would receive better care if they were of a different race or ethnicity. The demographics in the United States (US) are changing, with ethnic minority populations growing at rates that surpass the rest of the nation.3 This fact, combined with the findings from these two reports, makes the development of culturally competent and culturally tailored programs crucial. Such programs can contribute to reducing long-term health care costs and fulfill social justice goals of equitably addressing the health needs of all communities.

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The purpose of this article is to: 1) delineate the major barriers to health care access contributing to cancer disparities in Asian American and Pacific Islander (AAPI) communities; 2) discuss community-based, culturally tailored health navigation programs developed in recent years to improve access to health care for ethnic minority populations; 3) discuss conceptual issues related to cultural tailoring; 4) highlight the development of one particular cancer navigation program focused on seven Southeast Asian and Pacific Islander communities in California (the PATH for Women/REACH 2010 Project); and 5) discuss implications for oncology nursing education, practice, research, and policy.

THE NEED FOR CULTURALLY TAILORED PROGRAMS TO REDUCE CANCER DISPARITIES

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he American Cancer Society set goals of eliminating disparities in the cancer burden among population groups by reducing ageadjusted cancer incidence and mortality rates and by improving quality of life in the poor and medically underserved by the year 2015.4 Accomplishing these goals requires changes in cancer prevention and control research, education/training, programming and evaluation to better understand the effects of sociocultural variables on health status and behavior, along with the social determinants of health. Currently, only 5% of all diagnosed cancers are known to be caused by hereditary genetics. The remaining 95% of cancers are attributed to lifestyle factors, which are shaped by social and structural environments as well as cultural beliefs, values, and practices.5 More research is needed to evaluate the mechanisms by which sociocultural factors influence people’s knowledge, attitudes, and practices for cancer prevention and control given the ethnic and racial disparities in incidence and mortality rates for cancer.6 Although statistics indicate a sustained drop in cancer incidence and mortality rates overall in the US since 1992, the rates for ethnic minority groups, including Asian and Pacific Islander Americans, have increased or stayed the same.7,8

CANCER IN AAPI COMMUNITIES AND BARRIERS TO CARE

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ccording to the 2000 Census, there were 12,504,636 Asian Americans and 874,414

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Native Hawaiian and other Pacific Islanders (AAPIs) in the US, alone or in combination with one or more other races, making up a total of approximately 4.5% of the total US population. For AAPIs, cancer is a growing burden afflicting these heterogeneous communities. For instance, cancer is the leading cause of death for both Asian American women and men.9-11 Compared with other ethnic groups, Pacific Islanders suffer from a higher prevalence of obesity, alcohol consumption, and cigarette smoking – all risk factors for cancer.12,13 In aggregate, Native Hawaiians and Pacific Islanders are socioeconomically disadvantaged and medically underserved, lacking access to health and social services, leading to significant disparities in morbidity and mortality from cancer.10 In general, AAPIs have lower screening rates for cancer compared with other racial/ethnic groups.14,15 Because of the rising cancer incidence and mortality rates, as well as the low screening rates, more research is needed to understand and address the cancer control needs of AAPI communities. In working with AAPI groups, researchers face several important challenges that impact the design, delivery, and evaluation of cancer programs for these communities. One challenge is dealing with the heterogeneity and diversity between and within AAPI ethnic groups. The racial category of AAPIs encompasses more than 50 diverse ethnic and language subgroups, representing a wide range of different income levels, poverty rates, health insurance status, educational levels, and other socioeconomic indicators.16 However, data for AAPI groups are collected and reported in aggregate, thereby creating an averaging effect or ‘‘model minority myth’’ that makes those at greatest risk invisible and creates the illusion that AAPIs are healthier than other racial/ethnic populations.17,18 With the 2000 Census, the US government began collecting census data for AAPIs using two separate Office of Management and Budget categories (‘‘Asian American,’’ and ‘‘Native Hawaiian and Other Pacific Islander’’ [NHPI]).3 This change came about after many years of lobbying and educating by NHPI activists who fought to highlight the cultural and socioeconomic differences between these groups. However, national, state, and local cancer data for Asian Americans and Pacific Islanders often continue to be reported as one single, aggregate group (ie, AAPIs). A related research challenge that sometimes complicates the

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reporting and use of aggregated data is that many AAPI ethnic-specific groups are relatively small in population size. These smaller populations pose additional challenges to defining ‘‘appropriate’’ sampling strategies and generalizability guidelines for research studies. Another challenge faced by researchers and practitioners working with AAPI communities is that traditional research paradigms are usually based on the values of a monocultural, Eurocentric view of social behavior.19 This perspective places primary emphasis on individual-based constructs such as self-reliance, independence, selfefficacy, and autonomy, and disregards cultural variations in health behavior. In most AAPI cultures, the concept and value of the individual ‘‘self’’ is tied to the health and welfare of the family or larger community, and health decision-making is often a group process involving inter-dependent cooperation and consensus.20,21 Researchers working with AAPI communities need to be aware of their own biases and how their theoretical world views and investigative paradigms inform and influence their work in cancer research.22 Researchers studying cancer in communities of color and immigrant groups in the US have often use a ‘‘deficit’’ approach that only compares ethnic groups based on how poorly they fare in comparison to the ‘‘norms’’ set by the racial category of Caucasian or non-Hispanic whites. These researchers often assume that traditional ‘‘cultural’’ health beliefs and practices acted as barriers to appropriate and timely cancer screening and treatment, and accordingly framed their research and developed programs on these premises. In contrast, more researchers are using a multicultural perspective that recognizes the importance and value of health and well-being in all AAPI cultures. Several studies find certain traditional health beliefs and practices to be protective and positively associated with cancer screening behaviors.23,24 Researchers working with AAPI populations should recognize that some communities have experienced past negative research experiences involving wrongdoing or exploitation by outside researchers. These experiences have left some groups feeling used, distrustful, and/or suspicious of research. Health information programs designed for underrepresented populations have often failed in the past because they were culturally inappropriate. For example, programs may have been directed at issues seen as unimportant from the perspective of the target population; in-

formation may have been viewed as irrelevant because of message content and/or inappropriate modes of delivery; and/or programs may not have been well-integrated with the social and cultural values and behavioral norms of the community.25-27 Culturally sensitive and culturally competent programs addressing these concerns and the dynamics in power distribution, credibility issues, and ownership/control of research protocols and findings are more likely to succeed. Unfortunately, few programs have specifically targeted AAPIs to promote and sustain screening practices. In fact, while data on the cancer needs of certain AAPI groups in the US is sparse, available evidence generally points to critical policy needs and numerous barriers to care for these diverse groups, including inadequate data collection and program funding and lack of culturally sensitive and competent services to effectively disseminate information and treatment for these communities.13,28 AAPI communities face structural barriers to cancer screening, such as lack of health insurance, transportation, child care, language interpretation services, and regular source of care. Culturally mediated knowledge, attitudes, and behaviors regarding cancer etiology and treatment decisions also act as barriers to cancer screening. While many of these structural barriers to cancer screening are similar for different cultural groups, the strategies developed to address these barriers need to be culturally tailored to account for the unique needs and resources of these diverse communities.29 Few studies have investigated the specific processes required to tailor a cancer screening program to the cultural and structural needs and resources of underserved communities.22,30

ADDRESSING CANCER DISPARITIES THROUGH COMMUNITY-BASED HEALTH NAVIGATION

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ecently, the importance of communitydriven programs has received increasing emphasis on using community health navigators (CHNs) to promote and apply concepts such as collaboration, responsiveness, inclusiveness, and empowerment in their design, delivery, and evaluation. Many community-based participatory research studies collaborate with community lay health volunteers or paid staff who are knowledgeable about their communities and are aware of the

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most effective methods and strategies to reach those who have traditionally been labeled as ‘‘hard-to-reach.’’31-40 Lay health workers or navigators are defined as community leaders who educate community members about health promoting behaviors.41 Community health workers serve multiple roles and functions in diverse communities, including those in Hispanic and Latino communities42-50; African American communities51-56; Native American communities57-60; and Asian American and Pacific Islander communities.61-66 One study showed that community-based lay health workers were helpful in promoting prevention and early detection practices and in promoting access to cancer care services for ethnic minority communities.67 Currently, very few published studies exist on community-based health navigation and the available studies provide little consensus or cohesiveness regarding patient navigator definitions, theories, or models. A survey conducted by the National Cancer Institute (NCI) in 2003 found that more than 200 cancer programs nationwide provide some form of patient navigation.68 Health navigation programs vary widely in their approaches, with some using health care professionals such as social workers, nurses, and nurse practitioners as health care navigators, while others use trained community-based health care workers/lay health advocates or promotores.40,69 Overall, health navigators provide individualized attention and guidance for patients and their key supporters by assisting with tasks such as scheduling appointments, providing transportation assistance, coordinating care among providers, facilitating communication with family and providers, ensuring that follow-up and appropriate medical requirements are in place, arranging financial support and paperwork, providing translation/interpretation services, and conducting community outreach to build partnerships with local agencies and groups. By performing these duties and more, health navigators help patients overcome numerous structural and cultural barriers, thereby promoting timely and comprehensive screening, diagnosis, and treatment.70,71 The first patient navigation program established at Harlem Hospital Center in New York City was initiated by Dr Harold Freeman. Dr Freeman found that a culturally appropriate patient navigation program can help fill the gaps in services for those diagnosed with breast cancer and promote treatment without delay, thereby increasing sur-

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vival rates.72-74 While these early studies defined, described, and evaluated health navigator programs using a hospital and clinic-based model, relatively few studies have examined healthnavigator programs in community-based settings. Findings from these innovative cancer navigation programs indicate that community-based navigators are crucial in reaching people who have difficulty accessing mainstream health care services because they do not have a regular provider or health insurance. Oftentimes, the community navigators are the only link these patients have to routine care, initial cancer screenings, and follow-up.58,75-79 Curricula have been developed to train CHNs in diverse communities, including developments in the Asian American and Pacific Islander communities (K. Braun and J. Tsark, personal communication, June 2008), but more work is needed. Currently, the Centers for Medicare and Medicaid Services (CMS) and the NCI’s Center to Reduce Cancer Health Disparities are both testing cancer patient navigation programs to see if they improve the timeliness of cancer diagnosis, treatment, and follow-up. The NCI recognized that patient navigators are helpful resources in coordinating services throughout the cancer care process, and that ‘‘navigators from primary care or community health settings provide support and guidance, linking patients to existing health care services.’’ The NCI Patient Navigation Research Program seeks to answer the following research questions: How do patient navigation services assist patients in overcoming cancer care barriers (eg, financial, language, transportation, health system)? To what extent does type/ degree of service reduce or eliminate patient barriers to accessing timely, quality standard cancer care? Do navigated patients receive more timely cancer care diagnosis and treatment? Does matching of patient and navigator demographics and primary spoken language affect standardof-care adherence and perceived cancer care satisfaction? And finally, are patient navigation services cost-effective in reducing cancer health disparities?80 CMS is also investigating the potential costeffectiveness and cost-efficiency aspects of cancer patient navigation. Both NCI and CMS are examining how different types of roles and job backgrounds (eg, nurses, outreach workers, social workers, case managers, etc) in different types of working environments (eg, clinics, hospitals,

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community settings, etc) might influence navigation effectiveness. Most of the patient navigation curricula that have been developed (such as those by the American Cancer Society, Lance Armstrong Foundation, Health Care Association of New York State, Pfizer) provide basic information on cancer, communication tips and advocacy strategies to work with cancer patients and providers, patient navigator roles and responsibilities, medical system information and financial options, patient navigation services, and lists of clinical and community resources.71 Studies are beginning to address effectiveness by examining patient navigation within its ecological context, looking not only at individual behavior but also examining the social networks and other community structural factors that affect an individual’s access to health services.81-87 Few studies, however, have looked at how to tailor these patient navigation programs to cultural communities with unique needs and resources. Nevertheless, preliminary findings from this review indicate measures that are critical to the success of these past approaches and can be found in Table 1. Unfortunately, criteria and methods for implementing and evaluating culturally tailored patient navigation programs for diverse populations are still in the early stages of development, with most models again reflecting hospital- or mainstream system health care-based services. Cultural Tailoring Cultural sensitivity, cultural competence, and cultural tailoring are common terms heard regularly these days in the health promotion and nursing fields. The oncology nursing field has been at the forefront of developing cultural competency measures for the last decade because issues related to cultural competency are considered crucial components in interventions focused on reducing cancer disparities in racial, ethnic, and culturally

diverse populations.88 Numerous authors have contributed research to enhancing cultural competence in nursing research, education, and practice.89-98 What these definitions and models of cultural sensitivity and competence have in common is that they all emphasize the importance of looking at culture as a holistic, dynamic, and multi-layered system. Researchers have identified that a culturally competent system of care is made up of culturally competent institutions, agencies, and professionals that not only target but also tailor health programs to the cultural and structural needs and resources of diverse communities.30

REACH 2010 INITIATIVE/PATH FOR WOMEN PROGRAM

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n 1999, The Centers for Disease Control and Prevention (CDC) launched the Racial and Ethnic Approaches to Community Health (REACH 2010) Demonstration Project to eliminate disparities. The priority racial and ethnic groups included African Americans, American Indians, Alaska Natives, Asian Americans, Hispanic Americans, and Pacific Islanders.99 The purpose of the REACH 2010 project was to assist communities in organizing and preparing the infrastructure for the development and conduct of communitybased disease prevention and health promotion models. The AAPI communities highlighted hereafter were part of the REACH 2010-Promoting Access to Health for Southeast Asian and Pacific Islander Women (PATH for Women) Project. PATH for Women was formed in 1999 as part of the CDC’s REACH 2010 project funded by the Centers for Disease Control and Prevention Foundation through the generosity of The California Endowment, and was one of only five AAPI-focused REACH 2010 projects nationwide. The PATH for

TABLE 1. Measures of Success for Patient Navigation Programs in Cultural Communities With Unique Needs and Resources 1) Identification of community leaders seen as trustworthy and knowledgeable by community members. 2) Sufficient training for these navigators to function as knowledgeable resources and versatile problem-solvers in their community. 3) Ongoing support to help identify opportunities for referrals and sources of help.

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Women project is a community collaboration of seven community-based organizations and two universities (California State University, Fullerton and University of California, Los Angeles). PATH for Women focused on decreasing disparities in breast and cervical cancer among Cambodian, Chamorro, Laotian, Samoan, Thai, Tongan, and Vietnamese communities in Los Angeles and Orange Counties via the development of linguistically and culturally tailored educational materials, community health education, patient navigation, provider trainings, and policy strategies facilitated by community health outreach navigators. We are currently continuing our research to develop a formal health navigation training curriculum, but a description of the collaborative participatory action research process and the specific cultural tailoring aspects used by the Cambodian and Laotian communities have been detailed elsewhere.66,100 While survey results from the second phase of the PATH for Women project have not been completely analyzed, preliminary findings from interviews with the involved CHNs indicate several important ecological barriers to breast and cervical cancer screening, which can be found in Table 2. While these barriers were similar across communities, the CHNs tailored the observable and psychosocial aspects of their work according to the specific needs and resources in their communities. They used specific recruitment methods (eg, mass media, door-to-door, phone, etc) and conducted education and outreach in specific locations and settings (eg, temples, churches, grocery stores, businesses, community agencies,

TABLE 2. Common Ecological Barriers to Breast and Cervical Cancer Screening  Individual patient concerns, knowledge, and awareness about breast and cervical cancer and screening exams  Not having adequate assistance to navigate the health care system  Lack of health insurance/affordable health care  Lack of professionally trained health care interpreters and translators  Lack of time for health care because of employment and/or family obligations  Lack of transportation and child care  Lack of regular source of culturally competent care

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clinics, health fairs, etc) using linguistically and culturally tailored and relevant education materials and incentives. The CHNs’ efforts helped to support and link thousands of AAPI women to health care services that they would probably not have received otherwise.

CONCLUSION

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n summary, this article has provided a general overview of cancer disparities in AAPI communities, discussed the conceptual issues important in understanding what is needed to culturally tailor health interventions, and highlighted innovative community-based cancer navigation programs that have been developed to address these disparities, particularly the PATH for Women program focused on seven Southeast Asian and Pacific Islander communities in California. Despite the advances in cancer detection, treatment, and survivorship, racial and ethnic minorities continue to face many barriers to care and suffer poorer cancer-related morbidity and mortality outcomes.88 Community-based patient navigation interventions provide promising strategies for providing culturally tailored programs that are relevant to people’s lives and more likely to succeed in eliminating health disparities for diverse cultural communities.101 However, criteria and methods for designing, implementing, and evaluating these participatory and collaborative community navigation programs are in the embryonic stages of development. More exploratory studies are needed to assess the processes in recruiting and training CHNs and to develop criteria to assess their various roles and functions in the community and how they can work in partnership with nursing and medical professionals. Also needed are more experimental studies to test and evaluate the effects of specific health promotion strategies and techniques developed by CHNs across diverse communities.22 As more cancer prevention and control programs are involving community-based health navigators, it is imperative that we understand the theoretical concepts underlying this work so that training curricula and culturally tailored and effective cancer education, screening, treatment, and follow-up interventions can be designed and delivered in conjunction with innovative nursing and medical education, practice, research, and policy programs.

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ACKNOWLEDGMENT The authors gratefully acknowledge the work and contributions of the Promoting Access to Health (PATH) for Women Project research team, community health navigators, and collaborative

partners from the Cambodian, Chamarro, Laotian, Samoan, Thai, Tongan, and Vietnamese communities in Northern and Southern California. We also thank Mary Anne Foo and Jacqueline H. Tran for their reviews of drafts of the paper. This project was supported by a grant (no. 20001547) from the CDC Foundation through the generous support of the California Endowment.

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