Indigenous patients with cancer in United States experience great disparities in outcomes due to a range of social, cultural, and financial barriers. An expert at the recent AONN+ Midyear Conference drew on her personal experience to explain how indigenous patient navigators can help with the barriers unique to indigenous communities.
Cancer Care Barriers for Indigenous Patients with Cancer
Research shows that American Indians and Alaska Natives (AI/AN) experience great disparities in accessing and benefiting from healthcare services for cancer care. As an example, AI/AN in the Pacific Northwest and non-Hispanic whites (NHWs) have similar incidence rates for all cancer sites combined, but the AI/AN populations have higher cancer mortality rates, lower 5-year survival rates, and are more likely than NHWs to be diagnosed at late stage for prostate, cervical, breast, lung, and colorectal cancers.1
Many financial, social, and cultural barriers contribute to the disparities in cancer outcomes for indigenous patients. Such barriers are usually related to either system issues or personal issues2:
- Common issues at a systems level involve the distance to healthcare facilities and a lack of available transportation between indigenous communities and healthcare facilities. Other systems issues include a lack of communication between healthcare providers, lack of knowledge of indigenous benefits, and a lack of awareness of indigenous patient navigation.
- Personal barriers experienced by indigenous peoples involve the emotional, mental, cultural, and physical aspects of personal health, language barriers, lack of insurance coverage, and financial issues.
The solution to this problem is complex and the development of indigenous patient navigation has proved to be an effective intervention strategy. Some barrier issues can be better dealt with by an indigenous navigator who is familiar with local culture and customs as well as the healthcare systems in their respective communities3:
- Issues of trust due to prior history of mistreatment and its impact on healthcare access
- Communication unique to culturally specific tribal populations
- Cultural perceptions common to a specific tribal nation, band, or clan
- Spirituality such as traditional Indian medicine versus modern Western medicine and/or complementary medicines unique to specific tribal nations or geographic regions
- Logistical issues unique to the Indian Health Service (IHS)
The Important Role of Indigenous Patient Navigators
In a session titled “Indigenous Oncology Navigation” at the 2022 AONN+ Midyear Conference, Linda Burhansstipanov, president of Native American Cancer Initiatives, Inc, drew on her personal experience to explain why the indigenous navigator programs have become so popular.
Other than language translation and logistic assistances, Linda said that indigenous patient navigators provide a way to bridge the gap between Western healthcare and indigenous communities, and they help with many issues unique to the indigenous patients:
- Local biases and beliefs. For example, in some tribes, you cannot say the word “cancer,” because people believe saying it will invite the cancer spirit into their body or the body of their loved ones.
- The Indian Health Service. The IHS is a federal program that is responsible for providing direct medical and public health services to members of federally recognized Native American tribes and Alaska Native people. IHS has been underfunded, and the utilization of it for cancer treatment is a very complex process.
- Ceremonies and protocols. In some regions, direct eye contact is considered inappropriate, and you need to ask permission to touch a person. Particularly in the Northeast, if you touch the hair of indigenous people, they have to perform a ceremony afterward.
- Data collection. In some tribes, people are not allowed to talk about someone who has passed away, making it a challenge for healthcare providers to collect a family history of the patient or conduct a survey.
- Subtle cultural issues that make it difficult to collect family history. For example, the talking of “relationship” may be taboo in some tribes; in a conversation, people cannot say “your mother,” and will instead use references such as the woman who taught you to sow or who taught you how to do beadwork.
The ultimate reason why navigation programs become popular is because they work. For indigenous patients and those from all racial and underserved groups, navigator programs help improve access to timely and better services, improve quality of life, and provide continuity of care by multiple healthcare providers.
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- Grimes C, et al. American Indian and Alaska Native cancer patients’ perceptions of a culturally specific patient navigator program. Journal of Primary Prevention. 2017;38(1-2):121-135.
- Rankin A, et al. The role of the indigenous patient navigator: a scoping review. Canadian Journal of Nursing Research. 2022;54(2):199-210.
- Harjo LD, Lindstrom D. Rationale for “cultural” native patient navigators in Indian country. Journal of Cancer Education. 2014;29(3):414-419.