By Jessica Werb
The Cedar Project researches HIV and hepatitis C vulnerabilities among Indigenous young people who use drugs in Vancouver and Prince George
The ongoing impacts of the residential school system among Indigenous people in Canada have gained attention recently in response to the Truth and Reconciliation Commission and its powerful recommendations. In spring of 2015, some deeply concerning findings made headlines across British Columbia. Researchers from UBC and First Nations leaders found that young Indigenous women who had a parent who attended a residential school were more than twice as likely to be sexually assaulted compared to those who did not. It was the first study to make the statistical connection between residential schools and sexual assault rates in younger generations of Indigenous women. But it wasn’t the first compelling study to come out of the unique research partnership that is the Cedar Project.
Today, distressing reports of young Indigenous people’s experience in the foster care system continue to make headlines, yet few studies have focused on the effects of these systems on health and well-being among younger generations of Indigenous people, and what can be done to address them.
The Cedar Project
The Cedar Project, a long-term study based at the Centre for Evaluation and Outcome Sciences (CHÉOS ) at St. Paul’s, has been examining connections between the ongoing impact of the residential school and child welfare systems on HIV and hepatitis C infection among young Indigenous people who use drugs.
Initiated in 2003, the Cedar Project is a community-driven, interdisciplinary study involving 800 young Indigenous participants living in Vancouver and Prince George. Indigenous collaborators, collectively known as the Cedar Project Partnership, govern the entire research process. A key focus of the study is to understand the impact of historical and lifetime traumas on health, while also acknowledging young people’s strength and resilience.
A Project Partnership
“The Cedar Project highlighted issues – such as the high prevalence of childhood abuse and the relationship between residential schools and the current child welfare system – that we already knew, but the research made that academic connection,” explains Splatsin Chief Wayne Christian, co-principal investigator of the Cedar Project with Drs. Patricia Spittal and Martin Schechter of CHÉOS.
Cedar Project research has repeatedly demonstrated relationships between historical traumas and negative health outcomes later in life, including HIV and hepatitis C infection and sexual assault. Indigenous leaders who govern the study use these statistics as tools to advocate on behalf of their young people.
“Our community partners shape the appropriate way to navigate very difficult subjects,” explains Dr. Spittal. “They guided us to develop questions about residential schools, foster care, sexual abuse and historical trauma. From there, we were able to demonstrate that hepatitis C was directly linked to having a parent who is a residential school survivor.”
The Cedar Project Partnership is also advised by Elders, who emphasized the importance of including questions about sources of strength, resilience and connection to Indigenous cultures.
Recent findings published in 2015 showed that speaking traditional languages and participating in ceremonies were associated with higher resilience, regardless of having experienced childhood abuse.
Now, the study is using these powerful findings to develop and test programs to respond to HIV and hepatitis C. Its Blanket Program connects HIV positive participants with an Indigenous case manager who helps navigate barriers to services and supports treatment adherence. The name “Blanket Program” was chosen because blankets hold an important place in many North American Indigenous cultures, as they are used in giveaways and potlatches, to honour children with names, and to celebrate young people’s coming of age. The Blanket Program is now being adapted to support participants living with hepatitis C to access and adhere to the new direct-acting antiviral therapies that are transforming the treatment landscape.
“People think that it’s just about getting the numbers and getting the data. It’s not,” says Chief Christian. “It’s about building a relationship with each young person. The Cedar Project has really shown the multigenerational impact of residential schools, and it’s giving a voice to all those young people who need to be heard.”
A note on funding: For more than 13 years, the Cedar Project has received continuous funding from the Canadian Institutes of Health Research (CIHR).
Centre for Evaluation and Outcome Sciences (CHÉOS)
Based at St. Paul’s, CHÉOS is a multidisciplinary health research centre affiliated with the Providence Health Care Research Institute and the UBC Faculty of Medicine. Established in 1998, its mandate is to evaluate the effectiveness and impact of health services, systems and policies.
Supported with funding from St. Paul’s Foundation, CHÉOS currently has 140 staff and more than 50 scientists. Their work spans the areas of urban populations with mental health issues, addiction and infectious diseases. CHÉOS scientists also conduct clinical care research in areas such as aging, cardiology, nephrology, emergency medicine and critical care.
While CHÉOS conducts its own research, it also provides research support services such as assistance for study design, statistics, health economics and data management for health outcomes research and clinical trials. CHÉOS makes recommendations that help researchers conduct studies of the highest calibre and scientific integrity. Ultimately, the goal of CHÉOS is to influence change and improve health and health systems by empowering decision makers to find positive, evidence-based solutions.
For more information on CHÉOS, please visit www.cheos.ubc.ca.
Donate now to support the work of CHÉOS at helpstpauls.com/CHEOS.