Esk’etemc First Nation, located 50 kilometres southwest of Williams Lake, has transformed the way research is done in its community, and the positive impacts are beginning to show.
“We’ve had a lot of researchers come and go out of our community and some of it has had no benefit to our people, but a lot of benefit to the researchers,” said Doreen Johnson, head of the Esk'etemc Research Committee. This is what led Johnson to develop Esk’etemc’s new research ethics policy, requiring researchers apply prior to entering the community for research purposes.
“One of the first things that we decide is ‘is this research going to benefit us as a community,” she said. “If it's no, then the research application is declined.”
The first researcher to follow through the community’s new policy just passed her master's thesis defense in March, and she did so right in the community of Esk’etemc.
“It was kind of this monumental moment,” said Cara Basil whose research on palliative care for First Nations was conducted in Esk’etemc. She called it monumental because she believes this is the first time a student has ever defended their thesis on site in a First Nation community.
“It felt so good,” she said.
In 2021, Basil reached out to Esk’etemc, a community where she spent much time visiting her grandmother while she was growing up. When her research application was approved by Esk'etemc’s research committee, it took another four months to get started.
“We had to negotiate with them (the university) about getting Cara into our community, and it took us four months to do it because we wouldn't budge...we wanted to be a part of Cara's research journey,” Johnson told simplymastery.
Johnson and Basil said it was important to conduct the research on site and to have Johnson co-supervise the research.
“Through our journey, there were some things that happened that were really unlike other academic journeys,” Basil said. “We...were questioning and pushing the status quo and got Doreen as a co-supervisor because that was really key, to have her expertise and knowledge really upheld in a meaningful way."
The research was also unique in that it incorporated Indigenous research methodology. Once she got the go-ahead for her research from the University of British Columbia’s Okanagan campus, Basil organized three talking circles between 2022 and 2023 to speak with Esk’etemc community members about caring for those in serious or terminal illness.
“What we did is we invited...families to come out and share their stories of either living with illness or caring for other family members through illness and end of life,” Basil said.
Discussions in the first circle focused on what caring for one another traditionally looked like in Esk’etemc, and what community members are experiencing in the current health care system.
“And then we started to envision what the community needs today, what would it look like to have more support, more resources, develop some kind of model to bring to community from a community driven perspective and way of doing things,” Basil said.
The second circle explored what community members wanted to see in terms of care through illness and end of life, and the third circle introduced the concept of Nav-Care to discuss whether it would suit their needs. Nav-Care is a volunteer-run program which enables people living with declining health to continue living at home for as long as possible and to connect with people and services in their community.
It was concluded that Nav-Care would not suit Esk’etemc needs due to the remoteness of the community and its lack of resources and infrastructure to make it a safe and reliable solution. Basil also said community members emphasized their desire to develop a form of care which incorporates traditional practices.
“To say no this is not going to work...was good to hear,” Johnson said. “It gave the community control.”
Basil said this was central to the research; by incorporating the voice of community members and giving weight to their priorities, Basil’s research develops a conclusion which acknowledges the nation’s sovereignty over their health care.
She said what she heard from the community was that elders can get especially lonely through illness and so need day-to-day support, which is becoming more difficult for families to balance with the demands of today’s busy world.
“In our values as Secwepemc we take care of each other through our life span, and because of work, because of school...that’s fractured so we can’t take care of one another the way we used to,” Basil said. “Families are just really seeking more support because they're getting burnt out, they're experiencing caregiver grief.”
Through the talking circles, Esk’etemc community members built their own vision of what care could look like for them. This led to the idea of creating a team of paid and trained community-based navigators who could provide cultural supports, companionship, home care, transportation to appointments and who could help patients with ‘translating’ a diagnosis.
It’s all about improving the quality of life for people living with chronic or terminal illnesses, Basil said.
“What we started finding when I listened to some of our elders was a feeling of abandonment when they were left in a home,” said Irene Johnson, one of the community members who took part in the talking circles.
Irene said at the time Basil started her research, Esk’etemc had already been thinking about how the community can better support their elders through the final stages of life.
“A lot of our elders don’t want to go in a home...where family is not around,” she said, adding that this is happening more and more. In the past, Irene said the community would rally around a family to make sure an elder was comfortable in their final moments and would help with prayers and ceremony.
“We’re trying to look at how we can continue to take care of our elders...we need to come up with a plan.”
The community is working on the next steps, with the Esk’etemc health department looking at the potential for 24-hour care in the community.
“We don't want to just leave this here; we want to actually bring it to the community and make sure it's going to happen,” Basil said. She’s brought the results of her research to Interior Health and wants to continue the conversation with other health authorities to see how this new model can be implemented.
In the meantime, Basil is preparing for her graduation, which is fast approaching in June.
