Cancer has been a silent disease for Native communities, according to Jennie Joe, director of Native American research and training at the University of Arizona College of Medicine and professor in the department of family and community medicine, who moderated a panel on cancer prevention at the workshop.
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Many Native communities didn’t even know what the sickness was called, and indigenous societies didn’t know how to diagnose or cure it.
This is beginning to change, she added, partially due to the fact that cancer has become a major issue in Native communities.
Community-based organizations, in particular, are implementing novel approaches to prevention, early detection, and effective treatment that are both valuable and effective.
Three speakers covered programs in cancer prevention and treatment. JoAnn Tsark, project director at ‘Imi Hale Native Hawaiian Cancer Network, described a program to train both clinical cancer patient navigators and community cancer patient navigators in the Hawaiian Islands.
A comprehensive cancer control program was the subject of the talk by Kerri Lopez, director of Northwest Tribal Cancer and Western Tribal Diabetes Projects with the Northwest Portland Area Indian Health Board.
Linda Burhansstipanov, president and grants director of the Native American Cancer Research Corporation, shared some of the lessons she has learned in tailoring cancer prevention and survivorship programs for local communities.
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A Cancer Patient Navigation Training Program In Hawaii
Although Native Hawaiians make up about 20 percent of the population in Hawaii, cancer is a cause of death for Native Hawaiians at a rate 50 percent higher than for the state as a whole.
In response to this disparity, the ‘Imi Hale Native Hawaiian Cancer Network was established to increase cancer prevention and control in Native Hawaiian communities, cancer prevention and control research, and the number of Native Hawaiian researchers.
JoAnn Tsark described the Ho’okele I Ke Ola Navigating to Health program within the ‘Imi Hale network. The program is a community-driven effort to address cancer health disparities in Hawaii by training cancer patient navigators.
The health care system is fractured and disjointed in Hawaii, said Tsark, as in the rest of the country.
In addition, rates of mammograms and colonoscopies are lower for Native Hawaiians than for other groups, which means the cancers are detected later, are more complicated, and have worse outcomes.
Although some islands have sophisticated medical care delivery systems, other islands have fewer oncologists and services. For example, the island of Molokai has no oncologists or radiologists.
The Navigating to Health program involved communities from the start and sought to build on community strengths and values.
It promoted co-learning and capacity building and sought to provide tangible benefits, including an increase in the number of people who could access cancer services when needed.
It conducted an extensive review of navigator programs elsewhere, held focus groups with cancer survivors and their families on five islands, and consulted with mentors from the National Cancer Institute.
In the process, the program discovered three truths about cancer care, according to Tsark. First, cancer care is complicated and fractured.
Even within Hawaii, what Maui patients want is not necessarily what Kauai patients want. Second, regardless of regional preferences, all people need information, access to services, emotional and cultural support, and confidence and assistance to manage their care.
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Third, all patients face barriers both in the community and in the health care setting. As access barriers, Tsark listed
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high costs,
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no insurance,
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few providers and services,
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long travel distance to care,
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patients too busy to seek care, and
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stressed support systems.
In addition, systems barriers include
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running between different providers for different services,
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lost referrals and paperwork,
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not knowing who is in charge,
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not knowing what to ask,
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feeling intimidated, and
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providers’ lack of sensitivity, time to answer questions or knowledge of resources.
The ‘Imi Hale patient navigator model is designed to provide navigation through the cancer care continuum.
It is training both clinical cancer patient navigators and community cancer patient navigators because the two categories of navigators need expertise in their different domains.
The program identified 14 core competencies:
- Describe the role of a cancer patient navigator.
2. Explain the importance of maintaining the confidentiality of the people you help.
3. Describe barriers to cancer care and ways to overcome them.
4. Identify unique risk factors, tests, and treatments of cancer.
5. Identify related physical, psychological, and social issues likely to face people with cancer and their families.
6. Demonstrate the ability to gather data and create a “Patient Record.”
7. Demonstrate ability to find reliable cancer information from agencies and on the Web.
8. Describe cancer-related services available in your community.
9. Describe the advantages of participating in clinical trials and barriers to participation.
10. Define palliative care and hospice care.
11. Assist patients in completing an advance directive.
12. Demonstrate the ability to work through “mock” cancer cases.
13. Demonstrate ability to organize a resource binder.
14. Describe ways to care for yourself.
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The findings of the review process also shaped the format of the training. Future navigators receive 48 hours of training spread over 2 days per week for 3 weeks.
The training was instituted as a three-credit community college class because college credits were more valuable to the trainees than a certificate.
The training incorporated multiple methodologies, including lectures, class activities, onsite tours, role-playing, networking, writing, and developing resource binders, with an emphasis on communications, roles and boundaries, and relationships.
The curriculum and materials were developed from scratch to support the navigators, and funding came from a variety of sources, including an initial grant in 2005 from the Office of Hawaiian Affairs.
“I’m a believer that if you ask for what you want, and you know where you’re going to go, you’re going to get the funds to do it,” said Tsark.
Many of the physicians, radiologists, nurses, social workers, and others who were consulted in setting up the program agreed to volunteer for each 6-day session, which helped build relationships among navigators and health care providers.
Cancer survivors and previously trained navigators also served as trainers. “It’s not a very expensive program, but it is very much labor-intensive,” she explained.
By 2012 the program had conducted 11 48-hour pieces of training on four islands and 30 continuing education sessions.
It had produced 146 navigators, held 5 annual conferences, and made multiple national presentations.
It also had started to expand into screening navigation to enhance prevention.
The program established 13 paid positions for community patient navigators and received a grant to put navigators in three rural hospitals.
And the majority of graduates had reported using their patient navigation skills in their jobs as community outreach workers and health care providers.
Future goals of the program are to develop navigation programs in more clinical settings, strengthen navigation at both the screening and survivor ends of the cancer spectrum, receive third-party payor support for navigation services, and report and publish outcomes data for the state of Hawaii.
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“Did we increase the number of navigators? Yes. Did we increase the number of hospitals offering this service? Yes. Did we reduce financial and geographical cultural barriers? Yes. Did we establish it as a reimbursable service? Not yet. But we’re on there,” Tsark concluded.
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