“They were doing all these tests on me, but didn’t tell me I had colon cancer.”
“For a cancer patient you really need someone to go with you for support. I woke up alone… It really hurts when you’re alone.”
“I would like to hear from her why she wasn’t taking her medication.”
“Cancer is a scary diagnosis and you need support through the whole process… We could probably advocate for that more strongly.”
NWT Chief Public Health Officer Dr. Andre Corriveau gave a sneak peek Monday evening of some of the interviews being conducted under a new “brokered dialogue” that hopes to develop a conversation between Indigenous cancer survivors and healthcare providers in the territory.
The Dialogue and Storywork research project, funded by the Canadian Partnership Against Cancer, asked First Nations, Inuit and Metis patients to share stories of their cancer journeys in order to better understand how they experience the diagnosis, treatment, care and community services. Those video interviews were then shared with healthcare professionals to get their reactions, and the responses shared back with the patients for final commentary.
“We’re facilitating a dialogue that’s often difficult to have at the time of the clinical encounter because there’s only so much time for the appointment, so some of the issues never really come out,” Corriveau says. “It’s allowing some questions to be asked that maybe because of shyness or time constraints never really get dealt with.”
The project is being done in partnership with the governments of B.C., Alberta and Manitoba. In the NWT, 26 patients — all Indigenous — were interviewed, along with 14 care providers.
Though the project is still under completion, Corriveau showed a sample of videos during a presentation at Aurora College’s Thebacha campus in Fort Smith on Monday as part of the Aurora Research Institute’s ongoing speaker series.
The videos share the emotional journeys of Indigenous cancer survivors, highlighting existing gaps in the supports offered, while showing thoughtful responses by physicians that often acknowledge a need for greater advocacy on behalf of those with cancer trying to navigate the complex care system.
“One of the key things is the importance of having an escort support you when you get diagnosed and when you’re starting treatments especially,” Corriveau says. “People told us stories of being sent by themselves and having to navigate the system without a whole lot of support.”
Corriveau admits the system can be very difficult for patients, especially those from small communities who may have to make two or three stops on their way to Alberta or Yellowknife for an appointment, and that more can be done to make that process more comfortable.
Other themes that come up in the interviews include complaints about miscommunications, deficiencies in translation of medical terms into Indigenous languages, and loss of information.
“Sometimes the information doesn’t follow a patient when they’re being sent down for an appointment, so the healthcare provider misses something that was supposed to be followed up with,” Corriveau says.
Corriveau says the reactions of physicians have been positive and the patients’ stories helpful for identifying aspects of the healthcare system that need improvement.
“It’s about creating awareness. Sometimes physicians who’ve never been up North or don’t have the same background knowledge of the Aboriginal culture might be surprised by certain things,” Corriveau says. “Once physicians become aware of these issues, they can be advocates and support patients’ requests to have somebody accompany them. Before they might not have understood what was the big deal about it.”
The end product will be an online video resource intended to be useful for both care providers new to the North and new cancer patients processing their diagnosis. The findings will also go towards identifying priority actions for the GNWT’s new 10-year Cancer Strategy, which lists five main goals centred on prevention, screening, treatment, and aftercare/end of life care.
“By doing this across many communities, we hope to create a resource that will serve to orient new healthcare providers to the realities of people who live in remote Aboriginal communities and at the same time make the journey less daunting for the new patients and families,” Corriveau says. “By having those stories well-recorded and the dialogue available, it sort of demystifies some of the issues and the pathways they’re going to have to follow.”
Cancer is the main cause of death in the Northwest Territories, with breast, lung, prostate and colorectal cancer leading diagnoses and fatalities. For more information about cancer in the NWT click here.