Original Article
Enhancing Life After Cancer in Diverse Communities
Judith S. Kaur, MD1; Kathryn Coe, PhD2; Julia Rowland, PhD3; Kathryn L. Braun, DrPH4; Francisco A. Conde, PhD, ARPN5;
Linda Burhansstipanov, DrPH, MPH6; Sue Heiney, PhD, RN7; Marjorie Kagawa-Singer, PhD, MA, MN, RN8;
Qian Lu, MD, PhD9; and Catherine Witte, RPh, MDiv10
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: The Community Networks Program, funded by the
National Cancer Institute Center to Reduce Cancer Health Disparities, has developed and tested unique services for these communities. These programs have used 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 comC 2012 American Cancer Society.
munities by supplementing local resources. Cancer 2012;118:5366-73. V
KEYWORDS: community networks, cancer, quality of life, health disparities, palliative care, comprehensive cancer care, spirituality.
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 2 decades later, the 2005 Institute of Medicine 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 ethnoculturally 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.
Established in 1996, The Office of Cancer Survivorship at the National Cancer Institute (NCI) 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.’’ Although 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
(eg, second cancers, cardiac dysfunction, osteoporosis). Survivors from different ethnic and cultural groups, geographic
Corresponding author: Judith S. Kaur, MD, Division of Medical Oncology, Mayo Clinic, 200 First Street SW, Rochester, MN 55905; Fax: (507) 284-1803; kaur.
judith@mayo.edu
The authors thank Vicki Shea, research secretary, for her diligence in working with the authors to gather and submit this manuscript and associated paperwork
to the journal. The authors also acknowledge The Community Networks Programs grantees, their colleagues and community partners, and most importantly the
participants in these projects for whom this program was developed and without whom this effort would not have been possible.
1
Mayo Clinic, Rochester, Minnesota; 2Department of Public Health, Indiana University/Purdue University, Indianapolis, Indiana; 3Office of Cancer Survivorship, Division of Cancer Control and Population Sciences, National Cancer Institute, National Institutes of Health/Department of Health and Human Services, Bethesda,
Maryland; 4University of Hawaii, Honolulu, Hawaii, and ‘Imi Hale Native Hawaiian Cancer Network; 5The Queen’s Medical Center, Honolulu, Hawaii; 6Native American Cancer Research, Pine, Colorado; 7College of Nursing, University of South Carolina, Columbia, South Carolina; 8University of California Los Angeles School of
Public Health and Department of Asian American Studies, Los Angeles, California; 9Department of Psychology, University of Houston, Houston, Texas; 10Oncology
Center of Excellence, Phoenix Indian Medical Center, Phoenix, Arizona
DOI: 10.1002/cncr.27491, Received: July 7, 2011; Revised: October 19, 2011; Accepted: November 10, 2011, Published online March 20, 2012 in Wiley Online
Library (wileyonlinelibrary.com)
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Table 1. Community Networks Programs With Outreach Based on Innovation-Diffusion Theory
Program
Target Population
Intervention
Outcome
‘Imi Hale
NACES
Native Hawaiians
American Indians and Alaska
Natives (nationally)
Asians (Chinese)
American Indians in the Southwest
Providers (nationally)
Program development
web-based survivor support
CSCP ¼ Cancer survivor care plan
Quality of life analysis
Expressive writing
Spiritual care conferences
Palliative care training
JLA ¼ Joy Luck Academy
Videos
Access to palliative care,
increased competence
AANCART
SAICN
SOE
AANCART indicates Asian American Network for Cancer Awareness Research and Training; ‘Imi Hale, Native Hawaiian Community Networks Program;
NACES, Native American Cancer Education for Survivors; SAICN, Southwest American Indian Collaborative Network; SOE, Spirit of EAGLES.
areas, or underserved communities may have very different survivorship experiences. For example, in one report
at 2 years after treatment, African American prostate cancer survivors report lower satisfaction with the degree of
overall treatment outcomes than white or other ethnic
prostate cancer survivor 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
nonrural cancer survivors.8 Research should address the
factors that may lead to differential outcomes.
The NCI Community Networks Program (CNP)
initiative looks at the whole continuum of cancer care. The
NCI Center to Reduce Cancer Health Disparities funded
25 CNPs from 2005 to 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, such as academic, cultural, social, and/or 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 CNPs 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 and developing change agents and role models
needed to effect change over the long term within comCancer
November 1, 2012
munities 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.
‘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 Similar to 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 (Hawaiian for ‘‘talk
story’’) sessions to help the program set its research priorities.12 Others serve on Papa Ola Lōkahi’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 of a 5-booklet series on end-of-life
care,15 as well as a booklet, Cancer Care Questions to Ask
Your Provider, and in the production of television
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programs and public service announcements featuring
Native Hawaiian cancer survivors, and a DVD. ‘Imi Hale
also supported the testing of 2 cancer screening interventions featuring Native Hawaiian cancer survivors as storytellers 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. The Queen’s Medical Center
began its survivorship program in 2009. The program was
initially piloted with breast cancer patients, but soon
expanded to patients with prostate, lung, and colorectal
cancer. As recommended by the Institute of Medicine’s
‘‘Lost in Transition’’ report,16 cancer survivors are provided with a cancer survivorship care plan 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 cancer survivorship care
plan to their primary care physician.
The Queen’s Medical Center 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 statewide 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
The Mayo Clinic’s Spirit of EAGLES CNP 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 Web site.
NACES is organized as a QOL Tree with information
that is interactive, culturally appropriate, written at reading grade levels 5 through 7 for most pages, and based on
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Table 2. NACES Survivors Demographics
Characteristic
Number
(N 5 596)
Percent
486
105
82.2%
17.8%
32
282
173
94
5.5%
48.5%
29.8%
16.2%
148
162
27.0%
29.5%
152
87
27.7%
15.9%
(n ¼ 146)a
121
25
82.9%
17.1%
Sex
Female
Male
Year of birth
1970-1989
1950-1969
1940-1949
1910-1939
Education
Less than high school
High school/graduate
equivalency degree
Technical/some college
Associates/bachelors/
masters/doctorate
Sexual orientationa
Heterosexual
Gay, lesbian, transgendered,
other
NACES indicates Native American Cancer Education for Survivors.
a
Sexual orientation item added in 2009, and thus fewer responses.
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 Web site immediately
began receiving requests and input from survivors of cancers other than of the breast. As of January 2010, the
NACES database included 596 Native American cancer
patients (Table 2). There are more females than males,
because the Web site 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 and 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.
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 onethird 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
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Cancer In Diverse Communities/Kaur et al
late effects from their cancer, including persistent fatigue,
weakness, and difficulty concentrating.
Asian American Network for Cancer Awareness
Research and Training
Historically, few studies focused on psychological needs
of minority cancer survivors. 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
Asian American Network for Cancer Awareness
Research and Training (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 longterm 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 in general, 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 nonprofit organization, the Herald Cancer Association,
worked together to implement and evaluate a 10-week
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November 1, 2012
psychosocial and educational program named ‘‘Joy Luck
Academy’’ (JLA) that was planned and implemented by a
local Chinese nonprofit 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. In addition, 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
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 Southwest American Indian
Collaborative Network (SAICN). The SAICN partnership
included the Intertribal Council of Arizona, Incorporated;
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 healing for illnesses is sought.
Long before the practice of Western or modern medicine,
traditional American Indian practitioners approached their
patients as whole persons for whom restoring health
included restoration of spiritual well-being. Reliance on
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
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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, because it symbolizes and
honors the respect for spirituality and the importance of
interpersonal relationships between the patient and his or
her health care team.
Hospital 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 more than 200 participants.
To reach a wider audience about American Indian
concerns, 2 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, Incorporated, Web site at http://www.itcaonline.com/saicn/
Resources.html. An accompanying discussion booklet with
questions based on the videos is currently being produced.
Spirit of EAGLES 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 Indians,22 and rural, underserved populations2,23,24 in particular, are unlikely to access palliative
care programs. African Americans too are underrepresented
in many areas of clinical investigation, including end-of-life
5370
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 conducted 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 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 essential,32 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.34-38
Research supporting models of palliative care in
underserved communities is desperately needed. An
example of an innovative program is a train-the-trainer
model using cultural adaptations to EPEC-O (Education
in Palliative and End-of-Life Care for Oncology) developed within Indian Health Service in conjunction with
the Spirit of EAGLES CNP.39 From 2006 to 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
United States (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.
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 whereas most people report good
health in general, a substantial proportion of survivors
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Table 3. Comparison of Responses from Intensive Conferences (2007/2008)
Question
% Agree/Strongly
Agree (% Respondents)
May
2009
2007/2008
Combined
91.7
100
79
100
70.8%
43.5
47%
29%
42.1
15.8
31.6
15.8
10.5
29
7
17
10
17
Lack of clinical knowledge on the part of health care providers
Insufficient staff
Not enough resources
20
25
50
24
27
22
experience lasting physical, social, and economic consequences of their illness.40-42 A recent review calls for special attention given to older adults and minority longterm cancer survivors in monitoring cancer-related characteristics and comorbidities.43 Survivorship researchers
recognize 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
Although 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 United
States, she or 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 health care 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
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, and storytelling.
4. Spirituality and social support are critically important issues in many cultural groups. These
must be addressed in program planning, because
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 ‘‘5th vital sign.’’
Since my return, I have had the opportunity to use something I learned at the conference
The conference was successful in increasing my overall knowledge about
palliative care principles and practice
I have used EPEC-O materials as a resource for palliative care issues or talks
I have provided training in palliative care to others since participating in the conference
Since the conference, what new programs have been started at your service unit?
Interdisciplinary team(s)
Pain consults
Advanced planning/communication consults
Loss/grief counseling
Other/hospice
In your opinion, what is the biggest barrier to providing palliative
care in your health care service area?
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
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Table 4 shows elements for building survivorship
programs for diverse groups.
Conclusions
Quality of life is an important outcome across the cancer
trajectory but is especially important in tertiary care.41,47
The meaning of QOL may have different nuances in
specific social and ethnic groups, but overall it refers to
well-being in various domains of life, usually physical,
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Table 4. Elements for Building Survivorship Programs for Diverse Groups
Element
Examples
Engaging survivors from diverse groups in program
planning and delivery
Involving survivors in research to enhance understanding
and improve well-being of diverse groups
Respecting diverse cultures by attending to spirituality,
storytelling, cultural values, and ceremony
Tailoring and adding services to assure access by diverse
groups to quality survivorship
Engage them to develop program priorities and strategies
Invite them to pretest educational materials
Feature their stories and photos in educational booklets, DVDs, and so forth
Involve them in interventions as educators and translators
Include them as trainers of cancer patient navigators
Engage them in identifying research priorities
Add them to institutional review boards and advisory boards
Involve them as research associates, providing training to build research capacity
Learn how cancer is experienced in different cultural groups
Study ways that quality of life is defined and can be enhanced in different
cultural groups
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
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 (eg, links to transportation, insurance, charity programs,
pharmaceutical assistance)
Advocacy for better quality of life for those living with or dying of cancer
social, psychological, and spiritual.48-50 A recent publication
on QOL research in Chinese breast cancer patients in
Shanghai, China, 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 CNPs use 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 article, 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. Across
cultures, illness, recovery, and death 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 CNP
programs, which are largely driven by community partners, many of these cultural strategies, including music,
storytelling, and spirituality, are being valued. The
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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.
FUNDING SOURCES
‘Imi Hale–Native Hawaiian Cancer Network is funded by
National Institutes of Health (NIH) grant U01 CA114630.
Mayo Clinic’s Spirit of EAGLES Community Network Program
is funded by NIH grant U01 CA114609. Southwest American
Indian Collaborative Network is funded by NIH grant U01
CA11469. Native American Cancer Education for Survivors is
supported by Susan G. Komen for the Cure (POP0202135 and
POP0503920) and NCI (R25 CA 101938 and NCI U01 CA
114609).
CONFLICT OF INTEREST DISCLOSURE
The authors made no disclosure.
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