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Call to Action # 18: Health (18-24)

First Nations community engagement leads to the development of evidence and community-informed wellness strategies

January 18, 2023

NationTalk: Centre for Addiction and Mental Health – Many existing programs designed to address mental health and substance use challenges in First Nations communities are not culturally safe, wholistic or responsive to community-specific needs. The First Nations Wellness Initiative (FNWI) is a collaborative model for developing community-driven, evidence-informed and community-based wellness strategies in First Nations communities.

Renee Linklater (left), Senior Director, Shkaabe Makwa; Samantha Wells (centre), Senior Director, Institute for Mental Health Policy Research (IMHPR) & Ningwakwe George (right), Research Coordinator.

Led by researchers at the Institute for Mental Health Policy Research (IMHPR) and Shkaabe Makwa, the FNWI involves a research-to-action process, conducted in four phases:

  1. Learn – quantitative and qualitative data collection on the needs and concerns of community members through surveys, interviews, and focus groups;
  2. Identify – share and discuss local findings with community representatives to raise awareness regarding strengths and challenges affecting the community and identify a priority area for wellness strategy development;
  3. Implement – participatory action research to guide the development, implementation and evaluation of a wellness strategy; and
  4. Share – findings, recommendations and lessons learned are shared widely through knowledge translation activities within and across communities.

A Community Advisory Circle is established in each community to ensure that the research represents the perspectives of community members and addresses the needs and concerns of the community. Through strong partnerships with two First Nations, the FNWI has involved working to understand and address impacts of the COVID-19 pandemic, as described in the perspectives highlighted below.

Why was collaborating with advisors on the First Nations Wellness Initiative so important?

RL: This phase of the First Nations Wellness Initiative was carried out earlier during the COVID-19 pandemic. It was vitally important that we convened the Community Advisory Circles and engaged with those with lived and living experiences so that we were kept aware of the issues and stressors that were unfolding in the community. This propelled us to shift some of our timelines and methodologies.

SW: Close engagement with people with lived and living experiences is fundamental to the First Nations Wellness Initiative. We embrace this approach to ensure that all wellness initiatives are built around the lived and living perspectives of people who are facing mental health and/or substance use challenges. We are using participatory action research so that people with lived experiences are active participants in the research process rather than passive subjects.

NG: It was crucial to the success of this project to hear directly from the people impacted by mental health, violence and substance use issues. Too often, they feel marginalized, judged and not heard. Many times, others speak for them. All the participants felt honoured that we were including their voices.

What impact did engagement have on this project?

RL: Respectful engagement is the most important first step for inviting a community to participate in an initiative. We first engaged with the health staff to introduce the project and once it was deemed a benefit for the community, myself and Dr. Samantha Wells presented it to the Chief and Council and they proceeded to pass a Band Council Resolution to join the Initiative and strike a Community Advisory Circle to guide the work ahead.

SW: This approach ensures that wellness initiatives are tailored to the needs and concerns of community members. Participants feel that their perspectives and experiences are important and valued. They feel empowered by being key actors in wellness strategy development and become champions in sharing their knowledge and experiences with others.

NG: This project was able to gather rich data because the participants built up trust with the researcher and each other. It is important to note that we prioritized the participants’ well-being by moving at a pace that honoured and respected what was going on in their lives.

What advice do you have for those who are starting to do engagement work?

RL: I would say that it’s important to understand that engagement strategies may need to be unique and customized when working with different populations, communities and service providers. Sometimes Indigenous communities may want to involve traditional medicines, such as offering tobacco to research participants as they become engaged in the initiative, but that is not the same for all Indigenous communities – so it really is an opportunity to learn about the community’s expectations and how it is that they would like to be engaged. One First Nations health leader once mentioned to me that engagement in his specific community took four days and included a feast!

SW: Engagement is all about listening to community members and following their guidance. Remember that everyone’s experience is different, so diverse perspectives are needed. Engagement is a process, not a single event.  It involves careful planning to ensure that there are multiple points of engagement. Don’t assume you understand the realities of people’s lived experiences. Your interpretation of people’s stories/experiences may be incorrect or biased, so it is important to check back with advisers to address as best as possible any biases so that findings and study outcomes are accurate, meaningful and impactful.

NG: The folks at the Institute for Mental Health Policy Research were bang-on when they prioritized hiring a researcher from the community, a person trusted by many, to get the best possible data. A self-care plan is important because a researcher may be hearing some heavy and difficult things.

Why do you think engagement and collaboration are important?

RL: Historically, research with Indigenous peoples and communities in Canada has tended to operate as a very insular, yet invasive procedure. Engagement and collaboration is an opportunity to establish a respectful relationship that is reciprocal and responsive to the needs brought forward by the community. 

SW: Mental health research can be significantly strengthened when it is informed by lived and living perspectives. Engagement can spur new ideas, inform research designs, bring an enriched interpretation of the data and help apply knowledge to practice and provide better care. Engagement and collaboration are also important for informing evaluation plans. Overall, research with engagement is a win-win for everyone.

NG: Engagement and collaboration help to draw people out of their shells. People living with mental health, violence and substance issues have learned to put up walls to protect themselves, not realizing that those walls can keep people out – people who can help them to see the value in themselves.

FNWI research team members
First Nations Wellness Initiative research team at the National Indigenous Mental Wellness Summit on September 23, 2022. From left to right – Anika Altiman, Research Coordinator-Walpole Island First Nation, IMHPR; Ningwakwe George, Research Coordinator-Saugeen First Nation, IMHPR; and Ashley Cornect-Benoit – Manager, Research and Knowledge Mobilization, Shkaabe Makwa.

Anonymous Advisors—While Advisors were eager to share their perspectives and stories, they preferred to remain anonymous to mitigate judgement or stigmatization.

Why did you start partnering on this project?

Respondent 1: I found it interesting that CAMH was here and I wanted to learn more about what they had to offer. I have respect for the researcher, as she knew I overcame my own addictions and that I tried to help my daughter with hers. So when the researcher asked me to participate, I agreed.

Respondent 2: I felt that this project was very important for our community as it could bring us together to figure out ways to help our people begin to heal, get healthy and help our community acknowledge the difficult issues that need to be addressed. I believe that only good can come from working together, sharing stories and ideas, and speaking about our pain and trauma in a safe environment.

What was the most memorable part about engaging on this project?

Respondent 1: I like sharing my story for other people to hear and understand what I went through. I overcame all my demons. I liked talking about the pictures, it was a very interesting and enjoyable experience.

Respondent 2: The most memorable part of my experience was the love and trust I witnessed between so many people. I know it’s hard for most of us to trust others and share our stories but, during this project, we shared many heartbreaking experiences with the common goal of trying to address the tough issues so that we could help make changes in the future.

What advice do you have for other partners who are starting to do engagement work?

Respondent 1: When you are sharing your story, you have to be comfortable. Sometimes it might be hard and it might trigger some difficult memories.

Respondent 2: My advice to others would be to make sure the people that are tasked to do the engagement work have their hearts in it. These projects can’t work without people being able to trust and know that the ones carrying it out are loving, caring and genuine. One of the things I loved about this project was that I felt that we had an amazing group of people that were perfect for the task.

Why do you think engagement is important?

Respondent 1: It’s important to get your story out to others who might be struggling; you might help someone else out by doing so. It was hard in the beginning trying to put my addiction aside. People would look down on me and some were harsh. However, I kept learning what I needed to learn and now I do work for the harsh people who looked down on me, along with doing Sacred Fires for the community.

Respondent 2: I think engagement is important because, without it, we couldn’t even begin to understand how different issues can have so many effects. I think that engagement also helps people come together and realize that they are not alone and that others are going through the same type of issues. Ultimately, the more people that can contribute, the more discussions, ideas, plans and actions can be taken.

This community-driven research-to-action initiative ensures that participating First Nations maintain ownership and control of the findings of this research, along with subsequent resources that are developed. Impacts of this work so far have included local capacity building, establishing new supports in the community and building stronger connections in and outside the community to help address their needs.