“Community” reflects those smiles of hope and relief that someone is there to help the patients throughout their cancer journey.
Why Indigenous Navigators Join AONN+
As a community-based, nonprofit organization, Native American Cancer Research Corporation (NACR) has worked with various indigenous people (American Indian, Alaska Native, Native Hawaiian, Pacific Islander, Canadian First Nation/Aboriginal/Métis, New Zealand Maori, Australian Aboriginal). We have found that cancer programs in the indigenous community are greatly underfunded and, without partnering with academic/research institutions and many cancer centers, indigenous patients would be less likely to learn about cancer clinical trials and the decision-making choices.
The NACR staff joined AONN+ in 2016 and our membership has come with many benefits, especially the opportunities for us to partner with other organizations (clinics, academic, research, community-based) and individuals. AONN+ also provides superb resources such as online training and navigation publications. Among the many resources, the AONN+ Navigation Toolkit helps clarify navigation core competencies, different models of navigation, and how the role of the navigator changes during specific phases of the cancer continuum.
In 2017, AONN+ released a well-documented and well-referenced summary for 35 metrics that are needed to track and evaluate navigation programs. This document was more than timely to NACR's for-profit partner, Native American Cancer Initiatives, Inc. (NACI), a small, American Indian-owned business. We had been working with NACI staff to convert an online navigation evaluation system into an easier-to-use tablet (ie, iPad) program, which is designed to collect, track, and evaluate navigation programs. All 35 of the AONN+ metrics are included within our program which, along with multiple other filters, allow the program to be tailored for clinic, research, and evaluation uses. This is of particular importance to community-based navigation programs because many of them are not able to link with electronic health records whereas the navigators who work both from and within community-based organizations need high-quality data collection and reporting systems.
The partnership with AONN+ has been invaluable while developing and improving this navigation evaluation program. We have AONN+ members who serve on advisory panels for the program or take part in informant interviews to critique preliminary documents. These AONN+ partners have provided proactive and constructive guidance on how to improve this program. The AONN+ annual and midyear conferences also provide timely assistance for additional ways to improve the program, as every AONN+ speaker with whom we requested to talk in more detail and privately following their formal presentations has been helpful and supportive.
Many of the indigenous community programs are underfunded, and we need an organization that is willing to take a leadership role in obtaining a Department of Labor code that distinguishes patient navigators’ skills and roles from other positions and clarifies when navigators’ roles may overlap with others (eg, community health workers, lay health advisors). The Academy of Oncology Nurse and Patient Navigators (AONN+) is that type of organization, as they work well with other national navigation organizations.
Unique Challenges of Indigenous Navigation
While working at the National Cancer Institute (1989 to 1993), I had the opportunity to talk with Dr Harold Freeman, the grandfather of patient navigation. At NACR, we started our navigation program in 1994 and, at that time, the navigators were called “Native Sisters” or “Native Patient Navigators” (NPNs).
Since its inception, the Native Sisters programs have addressed the full cancer continuum, and we relied on other colleagues within the field to help with trainings and refresher courses. Although the NPN training we provided integrates core competencies similar to other navigation training programs, it also must address cultural aspects of navigation, which can be quite diverse and varies greatly from tribal and urban Indian programs throughout the United States.
During our collaboration with national navigation organizations, we found that almost all the organizations have AONN+ members at the table, and those members provide timely information and opportunities to join emerging or existing working committees. Of note, these are WORKING committees, not just a form that one signs and adds to their curricula vita or biosketch. We have homework, and it is one of our tasks to constantly remind or refresh people’s perspectives of the critical need and support for community-focused patient navigators, and the cultural issues that can best be addressed by a local navigator who is from that community and/or is highly regarded and respected by community members. These people know who, when, where, and how to reach out and support community members in culturally respectful ways regardless of where the individual is within the cancer continuum (eg, screening for healthy people as well as family support for those who have children diagnosed with cancer and have few resources).
Cultural navigation typically is based within community or lay (non-licensed) navigators, but we also can have very gentle and kind licensed navigators (social workers and nurses) who bring many additional resources to communities that are unserved or underserved—such as the indigenous community. Social work navigators have worked side-by-side with NPNs in finding resources that were beyond our reach.
For example, social work navigators found high-quality elder care while the indigenous patient was undergoing treatment hundreds of miles away from home (long distances for cancer care are very common among indigenous cancer patients). Another example is of an indigenous cancer patient who was to undergo a long-planned cultural and spiritual ceremony that was to be held in rural areas that have rough geography and were experiencing extreme weather (temperatures over 100 degrees). The social worker was able to provide cases of bottled water for the patient and family members, who also were taking part in the ceremony on behalf of the survivor (ie, survivor had to have family members do the ceremony because the patient was not healthy enough to do so). Others helped find hotels for reduced costs so that family members could be present while the patient was in the hospital hundreds of miles away from home.
Oncology nurse navigators have supported the Native Patient Navigators (NPNs) when cultural modifications needed to be integrated for the indigenous cancer patient. While some healthcare providers call our treasured spiritual items “paraphernalia,” we have protocols for who is allowed to touch items such as eagle feather(s), totem bag, pipe, as well as when, where, and how such sacred items are handled. Oncology nurse navigators typically are protective of such items, and they educate others on the hospital floor to respect the patient, not to touch the items, or to ask the patient about how or why the items are so important for recovery from cancer or the treatments.
The Start of Indigenous People’s Navigation Network
While working with AONN+ on multiple committees, I kept hearing about Local Navigation Networks (LNNs) such as what these LNNs were doing and how they were finding resources, and help for navigators in their local area. I have attended many indigenous gatherings and we share comparable challenges (eg, travel), but our solutions may be quite unique to our continent. I asked Sharon Gentry, our faithful leader of AONN+, if it was possible to interpret “local” a bit differently. All indigenous cultures have a unique relationship with Mother Earth…, and that is how we are using “local” within the Indigenous Peoples’ Navigation Network (IPNN, pronounced, “I pin”).
Here are some frequently asked questions about IPNN:
- Why an Indigenous Peoples’ Navigation Network? There are both cultural and geographic challenges and solutions that may be unique to indigenous communities and patient navigators who work in those areas. Many navigators work in isolation. The focus of IPNN is on sharing stories of how navigation programs have overcome challenges in culturally respectful ways. Such stories may help PNs working in another region or continent try something new or modify what was done to be locally appropriate to one's setting.
- What is the purpose of IPNN? It provides a virtual support program to address culturally and geographically unique challenges and solutions of indigenous navigation programs.
- Who are the primary and intended participants? Cancer patient navigators who work within indigenous programs in the United States, Pacific Islands, Canada, New Zealand and Australia. This includes both indigenous and non-indigenous navigators who are interested in working respectfully within our communities.
IPNN began recruiting interested members in August 2021. Our meetings have challenges such as dealing with extreme time zone changes (eg, 6 pm in Colorado is 8 am the next day in Perth, Australia). Despite these challenges, we held our initial gathering on September 21, 2021 (virtually of course); the second session on November 22, 2021; and the third session on March 15, 2022. The total IPNN membership as of March 2, 2022 is 58, of which more than half are indigenous people and most work directly with indigenous communities. Due to work schedule and time zone challenges, each virtual gathering had about 18 participants. We had speakers who shared what is happening within their local indigenous program, what services they offer, and the type of help needed for their respective programs to increase infrastructure and long-term support.
Yes, we live in poverty, but we are proud of our traditions, our beliefs, our local stories, and our resilience. Yet, we all are doing our best to provide help and support and we will get through these current trials and continue to succeed. After all, we have wonderful partners and are working for win-win collaborations that are respectful and productive. Wado for all that you each do to contribute to helping communities such as mine!
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