It’s important to support Indigenous cancer patients and families in culturally appropriate ways. Dialogue and Storywork is a project designed to improve the transitions and outcomes of First Nations patients during the cancer journey.
Short stories, based on Indigenous story-telling traditions help show the many values, beliefs and needs of Indigenous cancer patients. First Nations’ patients and family members, along with their family doctors and oncologists (cancer doctors), from British Columbia, Alberta, Manitoba, and the North West Territories, are featured. The videos raise awareness about the cancer journey experienced by Indigenous patients and their families and promote understanding with healthcare providers.
We hope they will help improve the Indigenous cancer care experience.
Video 1: Immediate Impacts of a Cancer Diagnosis (22:59 min)
A cancer diagnosis is a difficult time for everyone. Fear about the future and worry for yourself and your loved ones is common.
When a person is diagnosed with cancer, often their first thoughts are of dying. Marie Janvier from Alexander First Nation, Alberta, talks about not knowing what to do when her husband’s cancer gets worse. Elsie Lemaigre from Chipewyan Prairie First Nation, Alberta, talks about her fear of what others would think and say after her diagnosis of cancer, and how she chose not to talk about it. Lena Keith from Alexander First Nation, Alberta, talks about her long family history with cancer and trying to get her family and relatives to go for screening.
Family doctors and oncologists talk about the diagnosis and impact of cancer, the experience of residential schools and its impact on future generations. Cancer is an emotional disease. It’s normal to feel afraid, so it’s important for oncologists and other health care providers to talk openly about concerns with patients and families.
Video 2: What was Heard, and What is Expected (13:46 min)
Often, when learning about a diagnosis, patients and family members don’t hear anything after the word “cancer.” Feelings of shock, fear and uncertainty are normal.
Jules Nokohoo from Chipewyan Prairie First Nation, Alberta, talks about his emotional reaction when he first learned of his brother’s cancer diagnosis. Elsie Lemaigre from Chipewyan Prairie First Nation, Alberta, talks about her reaction when the doctor first told her she had cancer.
Family doctors and oncologists talk about cancer, treatment and coping. They also talk about the uncertainty of a patient’s journey and how they would like to have more time to spend with their patients.
Video 3: Care in the Community (17:34 min)
Strong family and community supports can provide a better experience when a person is faced with a cancer diagnosis. This video focuses on self-care, family and the need for a community support system. Jerome Yellowdirt from Alexander First Nation, Alberta, talks about the importance of family and aftercare. It also shows the need for information about cancer and caring for loved ones before and after treatment.
Family doctors and oncologists talk about the importance of family and community support, and the need for helping guide patients through the cancer care system.
Video 4: The Challenge of Communication (18:56 min)
Good communication between patients, families and the healthcare team is very important.
This video shares stories of the need for good communication, and the misunderstandings, assumptions and challenges that sometimes exist. Marie Janvier and Elsie Lemaigre from Chipewyan Prairie First Nation, Alberta, talk about the need for doctors to spend more time explaining cancer and its treatment, rather than giving out printed information. Rema Kootenay from Alexander First Nation, Alberta, talks about wanting doctors to listen to a patient’s concerns to better support them.
Family doctors and oncologists respond by talking about the need to be clear, give helpful information and find out the patient or family members’ concerns to better meet their needs.
Video 5: Cultural Wisdom and Strength (5:11 min)
This video explores the importance of Indigenous culture and using traditional knowledge with modern medicine to support wellness.
Rema Kootenay from Alexander First Nation, Alberta, talks about the power of belief and the strength she received from working with her spiritual leader and family members. Two Indigenous caregivers share their stories of caring for a loved one, and the challenges with being in hospital and feeling culturally supported.
Video 6: Traditional Medicines (23:08 min)
The use of traditional medicine has been passed down through generations by traditional knowledge keepers and Elders. It’s important fordoctors to know if patients are being treated with or using traditional medicine. Open communication and respect is needed since Indigenous patients don’t always tell their healthcare providers that they are using traditional medicine for treatment.
Jerome Yellowdirt from Alexander First Nation, Alberta, talks about his experience using traditional medicine and the challenges that make it difficult to access traditional medicines and food. Other Indigenous participants talk about taking traditional medicine, living in balance and eating traditional food.
This video also features family doctors and oncologists talking about how they don’t always understand or know about traditional healing methods and their importance to Indigenous patients and families. It also gives their perspectives of how we look at disease and treatment through different cultural lenses.
Video 7: Companionship and Travel (18:43 min)
This video talks about travelling for care and treatment and the benefit of having a companion. It also looks at some of the hardships of travel for care such as bad roads and weather, staying in hotels and being separated from community and family supports.
The Indigenous people in this video share their stories of the isolation that comes from leaving their support system and travelling long distances from remote communities to cancer centres. Jules Nokohoo from Chipewyan Prairie First Nation, Alberta, talks about the financial stress of getting care outside the community and Marie Janvier from Chipewyan Prairie First Nation, Alberta, talks about the need to support family, especially those who don’t speak English.
Family doctors and oncologists understand that there is extra stress and costs when you travel for treatment so it’s important that patients and their caregivers have access to more support and assistance.
Video 8: Knowledge and Healthy Living (22:04 min)
This video discusses the importance of knowing the facts about cancer and its effect on people’s wellbeing. We also focus on cancer prevention and the importance of healthy living to help in the recovery from cancer.
Jerome Yellowdirt from Alexander First Nation, Alberta, talks about the lack of information and awareness about cancer that exists in the communities. He emphasizes the need for patients, families and the community to have correct information on cancer and treatment.
Family doctors and oncologists talk about how important it is to play an active role in your care, having a healthy lifestyle and getting information when you need it.
If you are interested in the full interviews of the participants, visit the Dialogue and Storywork section of the
Saint Elizabeth Research Centre website.