Empowering Health Equity Through Prevention and Self-Management: Co-Designing Culturally-Tailored Pre-Clinical & Diabetes Education for Black Older Adults in Peel

Project Overview: Working with a team that includes researchers, community care organizations, older Black adults living with diabetes, a family caregiver, and a clinician, this project aims to co-design and implement a culturally-tailored self-management tool to better support this community. Because Black adults face an increased risk of developing type 2 diabetes for a range of interconnected reasons, the project seeks to provide more targeted and effective supports to improve health outcomes.

For Errol Cyrus, involvement in the Empowering Health Equity Through Prevention and Self-Management Catalyst Grant project began as a participant. After years of work in social justice, he felt compelled to join a research study focused on his own community — older Black adults — and his professional background made him a natural fit to become an interviewer and recruiter for the team.

The research leads, Drs. Kristina Kokorelias and Michael Kalu, were thrilled to involve him more deeply in the work. Though this was his first formal research experience, Cyrus had long worked with people with physical disabilities and had served with Humber College as a project manager on an EDI and anti-racism strategic plan. "I have a deep and abiding interest in social justice work, and certainly more so in terms of anti-Black racism as someone who identifies as a Black man," he says. "It was a no-brainer to be a part of this project."

In many ways, the project was also a first for Kokorelias, who had not previously focused on diabetes in her research, having concentrated more broadly on the health of older adults with complex care needs. She was drawn to the idea of doing community-driven, equity-based research alongside a principal investigator, Kalu, who comes from the community itself.

Having Cyrus on board allowed the team to adapt and grow the project in ways that created meaningful inroads with older Black adults. Where they had initially planned to spend funds on translating their materials, Cyrus helped them recognize that most of the people they wanted to reach were already comfortable communicating in English. He helped redirect resources toward non-traditional recruitment strategies instead — such as outreach in Caribbean grocery stores, where people were already thinking about food and nutrition. His instincts opened doors to individuals who might never have considered participating in research. "We trusted his judgment of where to go," Kokorelias explains. "You have your plan, but you need to listen and adapt. It might not be the most traditional approach, but it's what builds and keeps trust in the community."

Once recruited, participants — all living with type 2 diabetes or prediabetes — were interviewed to understand what culturally-tailored elements would make a self-management tool appealing and useful to them. At full-day design sessions, they provided detailed feedback and ideas about what might realistically work in their lives.

"There was a really big caregiving focus, which was unanticipated, so we put together a second session focused specifically on family caregivers," says Kokorelias. "We also noticed gender differences, so we're working on a manuscript about the experiences of older Black women — and we're co-writing it with our participants."

Self-management practices also differ by birthplace—Caribbean, Africa, or Canada, which Kalu says is surprising, and this finding has led to a new area of inquiry.

The team has been presenting their findings locally and has been encouraged by the strong sense of ownership community members have taken with the program. They are fielding frequent requests to speak at churches and community events, as well as to share the work with local healthcare providers.

Cyrus is not surprised that Black residents are motivated to engage with a program they helped co-develop. "We still don't trust the system. And as a practitioner of social justice, I understand where that comes from — systemic racism has shaped our relationship with healthcare. Our experience with the healthcare system is not always positive, and there isn't enough funding or intentional strategy to address the ongoing challenges the Black community faces."

These barriers often lead people to manage their health outside the formal system, sometimes turning to natural remedies or unvetted options. Having ownership in a tailored health program can help people feel more comfortable engaging with mainstream medicine.

Given this deep-rooted distrust, one of the biggest surprises for Kokorelias was how open participants were to receiving care from providers outside the Black community. "We asked a lot of questions about who should deliver a Black diabetes self-management program — who participants want to receive care from — and surprisingly, many findings showed that the provider doesn't have to be Black.” What mattered far more to participants was having a practitioner who understood and respected cultural differences, appreciated the importance of traditional foods and community values, and was committed to building a positive long-term relationship.

"We've learned a great deal along the way about how to co-create health programs that will actually be implemented," says Kokorelias, who hopes this work will inform better design practices in the future. "The bottom line is that culturally appropriate self-management is not a new concept — there just hasn't been sufficient uptake, and the community is still telling us that what exists isn't meeting their needs. If we can take something that was genuinely co-designed and worked for them, we can find out whether it truly has an impact on prediabetes and diabetes outcomes."

Cyrus agrees. "Until we get out there and do this work, we won't have a full picture of what's happening or be able to develop solutions together that are relevant and that will actually help people — whether they're Black, Brown, or Indigenous. We must have these conversations. We must have the support of government and community working together. And we must have the resources, financial and otherwise, to make that possible."