“ENHANCING LIFE AFTER CANCER IN DIVERSE COMMUNITIES”

Abstract

Background

Although large numbers of cancer survivors exist in every community, including minority communities, there is a significant gap in knowledge about best practices for these patients.

Methods

Community Networks Programs (CNPs) funded by the National Cancer Institute’s Center to Reduce Cancer Health Disparities, have developed and tested unique services for these communities. These programs have utilized community based participatory research techniques under a framework of diffusion of innovation and communications theory.

Results

This article describes some specifically tailored interventions that may be useful to a wide range of providers working with the underserved

Conclusions

Enhancing life after cancer can be achieved in underserved communities by supplementing local resources.

Introduction

In the first (1982) edition of the classic text Principles and Practice of Oncology Stephen Hersh’s chapter on psychosocial aspects of patients with cancer states that “most of the diseases called cancer fall into the category of chronic illness.”¹ That statement remains true today. The chapter stands out as historic due to its premise that the treating physician should consider the whole cancer patient, not just the cancer.

This humanistic vision notwithstanding, more than two decades later, the 2005 Institute of Medicine (IOM) report, “From Cancer Patient to Cancer Survivor: Lost in Transition,” painted an unsettling picture of how cancer care is being delivered.² Patients are not receiving care that prepares them for---or supports them after---the end of cancer treatment. Few health care providers are familiar with the short- and long-term consequences of a cancer diagnosis and treatment, and there is a lack of clear evidence about what constitutes best practices in caring for patients with a history of cancer. This is especially true in underserved populations.

Cancer prevalence figures, the number of persons alive with a history of cancer, for the United States, have been growing at a rate of approximately 3% per year. This number is rapidly approaching 12 million, representing approximately 4% of the population.³ It is expected that the numbers of survivors will continue to climb,^{4, 5} and, given current demographic trends, the numbers of survivors from ethno-culturally diverse groups will also rise.

Treatment regimens are now more complex, the decisions regarding these are often complicated, and a growing proportion of cancer care is delivered in the outpatient setting. There is a greater need among families and survivors alike for help negotiating cancer journeys that may last years, decades, or even a lifetime. This reality has fueled the development of survivorship programs and the fast-moving field of cancer survivorship research.

The Office of Cancer Survivorship at the National Cancer Institute (NCI), established in 1996, has seen an increase in the number and breadth of studies examining the trajectory of cancer survivors. The end of treatment does not mark the end of the cancer experience because as many survivors tell us, “It’s not over when it’s over.” While some of cancer’s adverse effects disappear or are reversed soon after treatment stops (hair loss, anemia, mouth sores), others can persist over time (pain syndromes, sexual dysfunction, fatigue, memory problems), and still others may occur months or years later (e.g., second cancers, cardiac dysfunction, osteoporosis).. Survivors from different ethnic and cultural groups, geographic areas, or underserved communities may have very different survivorship experiences. For example, in one report at two years post-treatment, African American prostate cancer survivors (PCS) report lower satisfaction with the degree of overall treatment outcomes than white or other ethnic PCS groups.⁶ Another study found that low-income Hispanic breast cancer survivors report high levels of economic distress, which is negatively associated with quality-of-life outcomes.⁷ Others observed disparities in mental health outcomes between rural and non-rural cancer survivors.⁸ Research should address the factors that may lead to differential outcomes.

The NCI’s Community Networks Program (CNP) initiative looks at the whole continuum of cancer care. NCI’s Center to Reduce Cancer Health Disparities funded 25 CNPs from 2005–2010 to develop community-based participatory research (CBPR) methods to reduce cancer health disparities.⁹ The basic principles of CBPR include a research approach that mandates a partnership between traditionally trained academic “experts” and members of a community, with all parties interested in addressing a common research problem. They draw on distinct sources of knowledge—academic and cultural/social/historical—to enrich the process. In this paradigm, community members, who are highly valued partners, participate fully in the planning, development, implementation, evaluation and dissemination of the research findings.

All of the funded CNPs developed programs addressing the needs of their unique populations and focused their attention on increasing awareness and access to care such as screening. Some of the CNPs developed and tested unique programs, materials and services to improve survivorship. Those were invited to contribute to this article.

We highlight CNPs (Table 1) whose outreach programs were based on innovation-diffusion theory.¹⁰ Their work enhanced cancer survivorship by increasing awareness, developing change agents and role models needed to effect change over the long term within communities of color. Their use of public health communications with strategic dissemination and evaluation of culturally relevant, accessible and understandable health information advances the public health. The interesting activities that follow range from development of cancer survivor plans, web-based survivor support, expressive writing for psychological support and spiritual conferences to palliative care training.

Table 1.

Program	Target population	Intervention	Outcome
Imi Hale	Native Hawaiians	Program development	CSCP= Cancer survivor care plan
NACES	American Indians and Alaska Natives (nationally)	web-based survivor support	QOL analysis
AANCART	Asians (Chinese)	Expressive writing	JLA= Joy Luck Academy
SAIC	American Indians in the Southwest	Spiritual care conferences	Videos
SOE	Providers (nationally)	Palliative care training	Access to palliative care, increased competence

Imi Hale = Native Hawaiian CNP

NACES= Native American Cancer Education for Survivors

AANCART= Asian American Network for Cancer Awareness Research and Training

SAIC= Southwest American Indian Collaborative Network

‘Imi Hale – Native Hawaiian Cancer Network

‘Imi Hale—Native Hawaiian Cancer Network (U01 CA114630) was established in 2000 by Papa Ola Lōkahi, a community organization in Hawaii dedicated to improving Native Hawaiian health.¹¹ Like other CNPs, the program’s goal is to reduce cancer incidence and mortality in Hawaiians by: 1) promoting cancer awareness; 2) training minority researchers; and 3) facilitating research. ‘Imi Hale recognizes the unique strengths and perspectives of community and academic partners who work together to articulate problems and develop and test solutions to address them. From the outset, Native Hawaiian cancer survivors have played a key role in setting the direction for ‘Imi Hale and informing programs and research projects. For example, 45 survivors participated in kukakuka (talk story) sessions to help the program set its research priorities.¹² Others serve on Papa Ola Lokahi’s Institutional Review Board and Community Advisory Committee, helping ensure that programs and research are meaningful and respectful of Native Hawaiian participants.¹³ Another 29 survivors, along with their family members, were involved in focus groups to help design a 48-hour training program to enhance the cancer patient navigation skills of outreach workers in Native Hawaiian communities, and some serve as faculty in this curriculum.¹⁴

Survivors play an important role in helping to pretest cancer education materials. They helped in the development and testing a 5-booklet series on end-of-life care¹⁵, as well as a booklet, Cancer Care Questions to Ask your Provider, produced television programs and public service announcements featuring Native Hawaiian cancer survivors, and a DVD. `Imi Hale also supported the testing of two cancer screening interventions featuring Native Hawaiian cancer survivors as story tellers and educators—one to promote colorectal cancer and the other to promote breast cancer screening.^{14, 15}

An ‘Imi Hale partner, The Queen’s Medical Center (endowed by Queen Emma Kaleleonalani) is the largest provider of cancer care in Hawaii and honors its mission to serve Native Hawaiians. Queen’s began its survivorship program in 2009. The program was initially piloted with breast cancer patients, but soon expanded to prostate, lung, and colorectal cancer patients. As recommended by IOM’s ”Lost in Transition” report,¹⁶ cancer survivors are provided with a cancer survivorship care plan (CSCP) that includes diagnosis and treatment summaries, a schedule of follow-up tests and appointments, contact information of providers, and educational information on side effects, community resources, and health promotion, such as cancer screening, smoking cessation, and physical activity. Patients are encouraged to give a copy of their CSCP to their primary care physician.

Queen’s also has a Pain and Palliative Care Department to work with patients to reduce pain and other cancer or treatment-related symptoms. The department is a member of Kokua Mau (Hawaiian for “continuous care”), a state-wide coalition to improve care for the dying, which helped pass the Physician Orders for Life-Sustaining Treatment (POLST) law in 2009. The department participates in clinical trials and sponsors research, for example the Comedy in Chemotherapy (COMIC) study to investigate the effects of humor on symptoms for patients receiving chemotherapy.

Native American Cancer Education for Survivors (NACES)

The Mayo Clinic’s Spirit of Eagles Community Network Program (CNP) [U01 CA 114609] subcontracted to Native American Cancer Research Corporation (NACR) to extend the Native American Cancer Education for Survivors (NACES) quality-of-life (QOL) Study.¹⁷ The purpose of NACES is to improve the QOL of cancer patients by increasing knowledge and informed choice using innovative, tailored web-based technology that is both culturally relevant and scientifically accurate. Native Patient Advocates (also called “Navigators”) help patients complete the 114 item QOL survey and access the survivorship information available on the website [Susan G. Komen for the Cure® [POP0202135] and [POP0503920] NCI [R25 CA 101938 and NCI U01 CA 114609]. NACES is organized as a QOL Tree with information that is interactive, cultural appropriate, written at reading grade levels 5–7 for most pages, and based on Native survivors sharing excerpts of their stories on videos integrated throughout the education materials. ¹⁷

The original NACES survey and web-based intervention was designed for breast cancer survivors and the findings were reported elsewhere.¹⁸ However, due to the severe lack of culturally appropriate survivorship information available for Native cancer survivors, the Native Patient Advocate Navigators and website immediately began receiving requests and input from non-breast survivors. As of January 2010, the NACES database included 590 Native American cancer patients (Table 2). There are more females than males because the website started with the breast cancer focus only. Almost half (46.2%) lived on the reservation, 72.2% traveled more than 100 miles one way to access cancer care, and 50.9% traveled between 4–18 hours one way to get to help. Of note is the low level of education, which is one of several reasons why the NACES education intervention is so frequently accessed.

Table 2.

NACES Survivors Demographics

	N=596	100%
Gender
Female	486	82.2%
Male	105	17.8%
Year of Birth
1970–1989	32	5.5%
1950–1969	282	48.5%
1940–1949	173	29.8%
1910–1939	94	16.2%
Education
Less than HS	148	27.0%
High School/GED	162	29.5%
Technical/Some College	152	27.7%
Associates/Bachelors/ Masters / Doctorate	87	15.9%
Sexual orientation*
Heterosexual	121	82.9%
Gay, Lesbian, Trans GLBT, other	25	17.1%
	146*

^*Sexual orientation item added 2009, thus fewer responses

Of the Native survivors who completed the QOL survey in NACES, more than half (54.5%) stated they had difficulty getting treatments. For 30.4%, there were no local clinics that could care for them, and almost 1/3 had difficulty completing referral papers to access cancer care through the Veterans Administration and Medicaid. More than half who were diagnosed with cancer 5 or more years ago reported long-term side effects or late-effects from their cancer (including persistent fatigue, weakness, and difficulty concentrating).

Asian American Network for Cancer Awareness Research and Training (AANCART)

Historically, few studies focused on minority cancer survivors’ psychological needs. Studies including sufficiently large samples from diverse groups to analyze effects separately are rare, a limitation often due to recruitment and methodological challenges. Fortunately this picture is rapidly changing.^{19, 20}

AANCART investigators asked 19 Chinese breast cancer survivors with limited English proficiency to write about their deepest thoughts and feelings, their coping efforts, and positive thoughts and feelings regarding their experience with breast cancer.²¹ This expressive writing intervention was associated with long-term improvement of health. Investigators further explored unique needs of this population by analyzing written essays using content analysis. The essays consistently revealed that language barriers, lack of health insurance, and financial concerns often prevented patients from visiting doctors and may have contributed to delay in diagnosis and treatment. One survivor specifically mentioned the late diagnosis of her cancer which might have resulted from lack of adequate communication. Cancer treatment created financial burdens and hardships, a finding that while not unique to Chinese breast cancer survivors, may be especially burdensome in this subset of women.

Similar to Caucasian breast cancer survivors, Chinese cancer survivors in the United States revealed worries about cancer recurrence, fear of death, sadness about their scar, and loss of their breast. In addition, several needs that were particularly salient to Chinese cancer survivors were identified. Survivors reported that they were afraid of telling their family about their breast cancer because they did not want the family to carry the burden. They felt alienated from their friends and were afraid to tell their friends about their breast cancer because there remains a widely held belief in the Chinese culture that breast cancer is contagious. Participants also disclosed their fear of telling others about their cancer diagnosis and emotions generally, likely due to Chinese cultural norms of not disclosing emotions. Thus, breast cancer seems to bring these women a sense of isolation from their existing social network, and there was a shortage of other available social supports.

AANCART investigators and a local Chinese non-profit organization, the Herald Cancer Association, worked together to implement and evaluate a 10-week psychosocial and educational program named “Joy Luck Academy (JLA)” that was planned and implemented by a local Chinese non-profit organization, the Herald Cancer Association. Upon finishing the program, a focus group was conducted to evaluate the needs of the women and the success of the program. Among all the educational sessions conducted, participants felt that the ones focusing on psychological adjustment and communication were the most useful. Additionally, they felt the need for more information on sexual adjustment to breast cancer and on communication with their spouses. The feelings of isolation from friends and social network were again echoed among participants. Participants strongly felt the need to have a safe place to talk about their breast cancer and express their feelings. Two bilingual participants compared the JLA with mainstream support groups that they joined and reported feeling more comfortable with JLA because of a strong sense of belonging to the group. This study suggests the need to collaborate with local communities so that they can provide a safe and culturally familiar environment for minority cancer survivors and develop culturally tailored psychosocial interventions for their community members living with and beyond cancer.

Southwest American Indian Collaborative Network (SAICN)

An innovative spiritual care program for cancer patients developed at an Indian Health Service hospital, the Phoenix Indian Medical Center, was a collaborative effort involving partner organizations in the SAICN, U01 CA11469. The SAICN partnership included the Intertribal Council of Arizona, Inc., Arizona Cancer Center, University of Arizona, and the Phoenix Indian Medical Center. Addressing spiritual needs is an integral and expected aspect of care for American Indians and their families when seeking healing for illnesses. Long before the practice of Western or modern medicine, Traditional Indian practitioners approached their patients as whole persons for whom restoring health included restoration of spiritual well being. Reliance upon spirituality and interpersonal relationships between provider, patient and families is an essential part of the provision of oncology care. The chaplain conducts advance directive and end-of-life discussions and this requires utmost sensitivity and cultural awareness. Some patients, because of tribal and spiritual beliefs, regard direct discussions about negative information or death as having the potential to literally cause harm. The chaplain also consults with the Traditional Indian practitioners who are members of the hospital’s Traditional Cultural Advocacy Committee to ensure that patients and families have access to their services, if requested, in matters involving traditional and/or ceremonial needs.

Oncology patients are honored by being presented with a Native handcrafted prayer shawl and an uplifting card at the initiation of chemotherapy. This simple gesture has a profound impact as it symbolizes and honors the respect for spirituality and the importance of interpersonal relationships between the patient and his or her healthcare team.

The hospital’s chaplains and Traditional Indian practitioners work closely with SAICN to hold spiritual care conferences promoting cancer spirituality, awareness, and education. Past conferences have addressed important topics such as grief and loss as experienced not only by individuals but also by the tribal community and the importance of storytelling as a means of healing. One such conference, “Celebration and Ceremonies for Life’s Transitions: Implications for Cancer Care with American Indians” had over 200 participants.

To reach a wider audience about American Indian concerns, two educational videos were produced based on presentations and interactions at the conference. The first video, “Cancer Has Crept Among Us,” features the story of an American Indian cancer survivor and her family’s multiple experiences with cancer in a rural reservation community in northwestern Arizona. Her story highlights cancer care disparities that are often present in American Indian communities. The second video, “American Indian Attitudes and Values: An Integral Part of Cancer Care,” features interviews with American Indian cancer survivors, family members, community leaders and health care providers on the importance of providing culturally and spiritually appropriate cancer care. The videos are available for viewing on the Inter Tribal Council of Arizona, Inc. website at http://www.itcaonline.com/saicn/Resources.html. An accompanying discussion booklet with questions based upon the videos is currently being produced.

“Spirit of E.A.G.L.E.S.” CNP

The goal of comprehensive palliative care programs, now considered standard-of-care for all acute care hospitals (www.capc.org), is to facilitate not only patient comfort and QOL, but patient autonomy, access to information, and choice. Unfortunately, many patients and families never access this important aspect of care. Minority patients, American Indians²² and rural, underserved populations^2,23,24 in particular, are unlikely to access palliative care programs. African Americans too are underrepresented in many areas of clinical investigation, including end-of-life care.^{25, 26} The limited research done with communities of color indicates that even basic treatment such as optimal pain management is lacking. Racial and ethnic differences in the assessment and management of pain, including chronic pain, are an important part of palliative care and must be part of efforts to reduce disparities.^{27, 28}

Although few studies have been done on pain management across racial and ethnic groups, communication between the patient and the provider may often be an issue in obtaining adequate pain relief. Patients may fail to accurately report the level of pain for various reasons, including the fact that they do not believe that the pain can be relieved and they are afraid of potential addiction.^29–31 Communication between provider, patient, and family is essential for ensuring optimal symptom management and respect for patient autonomy. Culturally respectful and specific materials about palliative care are essential³², but are often lacking. Storytelling is often shown to be an effective method for eliciting more accurate information from patients.³³ Clearly, research is needed in this area generally, but especially in minority and underserved populations which suffer disproportionate cancer-related mortality.^{34–36,37, 38}.

Research supporting models of palliative care in underserved communities is desperately needed. An example of an innovative program is a train-the-trainer model utilizing cultural adaptations to EPEC-O developed within Indian Health Service in conjunction with the Spirit of Eagles CNP (U01 114609).³⁹ From 2006–2010, more than 120 interdisciplinary providers nominated from service units within the Indian Health Service have received culturally competent end-of-life care training and are now implementing local programs across the US (Table 3). Other ethnic and racial minorities face daunting challenges in accessing palliative care and hospice. Overcoming disparities will require attention to this fundamental need for quality end-of-life care.

Table 3.

Comparison of responses from Intensive 2007/2008 conferences

	% Agree/Strongly Agree % Respondents
Question	May 2009	2007/2008 combined
Since my return, I have had the opportunity to use something I learned at the conference.	91.7	79
The conference was successful in increasing my overall knowledge about palliative care principles and practice.	100	100
I have used EPEC-O materials as a resource for palliative care issues or talks.	70.8%	47%
I have provided training in palliative care to others since participating in the conference.	43.5	29%
Since the conference, what new programs have been started at your service unit?
Interdisciplinary team(s)	42.1	29
Pain consults	15.8	7
Advanced planning/communication consults	31.6	17
Loss/grief counseling	15.8	10
Other/hospice	10.5	17
In your opinion, what is the biggest barrier to providing palliative care in your health care service area?
Lack of clinical knowledge on the part of health care providers	20	24
Insufficient staff	25	27
Not enough resources	50	22

Discussion

Communication theory explores how messages are created, transmitted, received and assimilated. This theory applies to serious public health messages such as those addressed by the community networks programs highlighted here. Targeted messages at the group level and social marketing within the community can debunk misconceptions about cancer, increase support for services and strengthen organizational relationships. Data from more recent studies of the well-being of long-term cancer survivors suggest that while most people report good health in general, a substantial proportion of survivors experience lasting physical, social and economic consequences of their illness.^{40, 41,42} A recent review calls for special attention given to older adults and minority long-term cancer survivors in monitoring cancer-related characteristics and co-morbidities.⁴³ Survivorship researchers identify a consistent theme identifying the importance of addressing socioeconomic and cultural factors that may affect (positively or negatively) adaptation and survival among diverse populations of cancer survivors.²⁰

While it is not realistic for any individual health care professional to be culturally competent in working with the multitude of ethnic groups found in the US, (s)he should learn about the predominant culture(s) in the area and act in ways that are culturally sensitive.^{44, 45} One way to be respectful is to listen carefully – behavior that is highly regarded across cultures.⁴⁶ Further, the healthcare professional must keep in mind that individuals within a social group may vary widely in their identification with their culture of origin and the degree to which their own actions approximate the cultural norms.

Community based approaches can be applied to reduce health disparities and enhance survival after cancer in diverse populations. Lessons learned from the current programs include

1. Programs developed and evaluated with active community input are most successful.

2. Research on needs of patients after active cancer treatment can help providers plan appropriate after care. Effective community based programs can and should be disseminated.

3. Health educators should draw on the important traditions held by members of the population served. In fact, program planners would be wise to work with the community, especially elders, to incorporate these traditions into the plans they develop. The humanities in medicine include art, music, poetry, storytelling.

4. Spirituality and social support are critically important issues in many cultural groups. These must be addressed in program planning, since issues such as acculturation and traditionalism may dramatically influence patient care across the survival continuum.

5. Palliative care training of providers is needed to upgrade quality of care across the cancer continuum. Pain control is typically inadequate across all patient populations and should be added as the so-called “5^th vital sign”.

Table 4 Elements for building survivorship programs for diverse groups

Table 4.

Elements for building survivorship programs for diverse groups

Element	Examples
Engaging survivors from diverse groups in program planning and delivery	Engage them to develop program priorities and strategies. Invite them to pretest educational materials. Feature their stories and photos in educational booklets, DVDs, etc. Involve them in interventions as educators and translators. Include them as trainers of cancer patient navigators.
Involving survivors in research to enhance understanding and improve well-being of diverse groups	Engage them in identifying research priorities. Add them to IRBs and advisory boards. Involve them as research associates, providing training to build research capacity. Lean how cancer is experienced in different cultural groups. Study ways that QOL is defined and can be enhanced in different cultural groups.
Respecting diverse cultures by attending to spirituality, storytelling, and cultural values, and ceremony	Encourage storytelling in cancer education and adjustment to illness. Facilitate linkages to spiritual care, including traditional ceremony. Learn about the cultural groups you serve, listen with respect, and treat everyone as an individual.
Tailoring and adding services to assure access by diverse groups to quality survivorship	Care plans that include disease and treatment summaries, follow-up schedules, and provider contact information Educational materials and classes Support groups Programs encouraging creative expression Help with advance care planning Palliative care, pain control, and hospice services Access services (e.g., links to transportation, insurance, charity programs, pharmaceutical assistance Advocacy for better QOL for those living with or dying of cancer

Summary

Quality of life (QOL) is an important outcome across the cancer trajectory but is especially important in tertiary care.^{41, 47} The meaning of quality of life may have different nuances in specific social and ethnic groups, but overall it refers to well-being in various domains of life, usually physical, social, psychological and spiritual.^48–50 A recent publication on quality of life research in Chinese breast cancer patients in Shanghai showed that women with the highest tertile of social well-being had reduced mortality and relapse rates when support was provided in the first year after diagnosis.⁵¹

The Community Networks Programs utilize community based participatory research (CBPR) principles to improve detection, treatment, and survival of diverse populations with cancer across the country. Quality of life from diagnosis through end of life is the ultimate goal. Cultural strengths exist in every community and enhance the success of these programs. In this paper we have highlighted projects developed by CNPs that aim to enhance life after cancer in diverse communities.

Around the world, for thousands of years, care of the sick regularly involved using a wide range of strategies – storytelling, spiritual care, music, ceremony – that were designed to meet the complex physical, spiritual, psychological and social needs of individuals. Illness, recovery, and death, across cultures, were seen as natural transitions in the circle of life and ceremonies were created to help individuals and their loved ones make these transitions more comfortably. Through the NCI’s CNP programs, which are largely driven by community partners, many of these cultural strategies, including music, storytelling, and spirituality, are being valued. The human need for this type of attention during difficult transitions is universal. Only when programs meet these needs will we be able to say we have truly comprehensive cancer care.