A detailed survey has been launched, with the aim of arming Nuu-chah-nulth communities with more data about the wellness of their members.
Those behind a long-term health research project expect results from the survey will be critical in getting government support for future initiatives. Available online, the survey takes 30 to 60 minutes to complete, covering a range of topics including the role of Nuu-chah-nulth culture in people’s lives, family relationships, screen time, community connections, income, housing, diet and questions about 50 diseases.
Available to members of the Nuu-chah-nulth Tribal Council’s 14 nations who are 16 and older, the survey is part of the Hishuk-ish tsawalk Healthy Children, Healthy Futures research project. The survey is also open to non-Indigenous people living on a Nuu-chah-nulth nation’s reserve or treaty settlement land.
“What we hope to do with this large survey is give back nations community-specific data,” said Serene Kerpan, research associate lead for the Healthy Children, Healthy Futures project. “We need data that reflects their lives and their ways.”
Formally known as the Indigenous Healthy Life Trajectories Initiative, the Hishuk-ish tsawalk project has been in development since 2017. After two preliminary two-year phases funded by the Canadian Institutes of Health Research, the project received $16 million from the CIHR in late 2022 to proceed with the long-form study to determine the factors that give children resilience to face challenges in life. Besides the 14 NTC nations, the project also involves Cree and Dene First Nations from northeastern Alberta, as well as the Cree Nations of Maskwacis in the Prairie province. The tribal council’s researchers are joined by others from the University of Alberta and Simon Fraser University’s Faculty of Health Sciences.
According to the project’s summary, the intention is to eventually improve the health of Nuu-chah-nulth people by understanding the roots of chronic conditions like Type 2 diabetes, obesity, heart disease and mental health issues.
“This data will help communities understand health across the lifespan and guide future programs and policies,” states the project summary.
Data that accurately represents a Nuu-chah-nulth community can also help to advocate for its needs, notes Kerpan.
“We can do more of a deeper dive, but unless you do a big, high-level survey like this, you don’t even know where to start digging in the sand,” she said.
The project aims to gain a deeper understanding than past provincial studies of First Nations in B.C., analysis that has often been marked by grim health outcomes.
One of the most recent of such wide-ranging reports was released by the First Nations Health Authority and the Provincial Health Officer in 2024. This health update indicated a diabetes prevalence of 8.5 per 1,000 among status First Nations in B.C., compared to the 6.4 rate for others that was tracked in 2021. In the report avoidable hospitalizations – which are incidents that could otherwise have been prevented through adequate primary care – affected First Nations at a rate of 72.6 per 10,000 annually in 2022, compared to 20.3 for others in B.C. Serious injuries were also higher among First Nations in that year, with a rate of 3.1 per cent compared to 1.3 per cent for other B.C. residents. Healthy birth weights were also less common among First Nations at a rate of 72.1 per cent – 10 points lower than others tracked in 2019.
This all resulted in a lower life expectancy among First Nations, and by 2021 the standard lifespan of 67.2 showed a drop of six years since it was tracked in 2017. Meanwhile life expectancy at birth remained relatively unchanged for the rest of B.C. at 82.5 years, according to the 2024 report. The FNHA cited deaths from COVID-19 and the toxic drug crisis as factors, as First Nations people face an overdose fatality rate six times greater than the rest of the province.
Hishuk-ish Tsawalk seeks to find a fuller, more complex picture of Nuu-chah-nulth communities through its data analysis. Besides the survey, another component of the project is to study the first two years of a Nuu-chah-nulth person’s life by engaging with young mothers before they give birth.
“We’ll be asking a lot of questions to mom on what she’s eating, supplements, how her health is, what her stress levels are like,” said Kerpan. “When does baby smile, when does baby sit up, when does baby take its first steps?”
This information will be provided back to the mothers, enabling them to be active partners in the study, and they will also be financially compensated.
“We know that the home environment, emotional support, the intellectual connection, all those things are really critical for how baby grows,” added Kerpan. “We want to ask some questions about that, but we want to do it in a good way that doesn’t perpetuate past harm.”
Since the early stages of the longitudinal study began years ago, data sovereignty has been a foremost concern for researchers in their engagements with participants, and the project is designed to be led by Nuu-chah-nulth. For some, distrust remains from the “bad blood” scandal, in which over 800 samples were taken from Nuu-chah-nulth-aht in the 1980s with the promise of finding a better treatment for rheumatoid arthritis. But it was later discovered that, without their knowledge or permission, these blood samples were taken to the United States and elsewhere to be used in genetic anthropology studies.
“We don’t ever want to appear that it’s surveillance or we’re some sort of colonial past ways of judging parents and the way that they raise their families,” said Kerpan. “If we want to share specific data and publish it, we have to go to those nations that have signed on as participating member nations and ask for permission.”
“Our team, partners, and communities are coming together to develop good data stewardship approaches that help to prevent unethical, extractive, and harmful research,” stated the Nuu-chah-nulth Tribal Council’s health research department on its website. “Hishuk-ish tsawalk Healthy Children, Healthy Futures provides an opportunity for communities to write their own stories of restoring healthy family systems.”
Those who complete the survey will be mailed a $40 Walmart gift card. The survey can be found here, and is available until November.
Information about the project can also be found on Facebook and Instagram.
