By Dr. Schola Matovu | Nursing Professor | Nurse Scientist | Director of Global Learning and Engagement
When the Experts Are Also the People Living the Experience
Several weeks ago, I found myself sitting in a virtual meeting listening carefully to a group of grandparent caregivers, community providers, advocates, and researchers.
On paper, the meeting was about reviewing podcast interview guides.
But what unfolded was something much bigger.
It became a reminder of why community-engaged research matters.
As researchers, we often spend tremendous amounts of time asking questions about people’s lives. We survey, interview, analyze, and publish. Yet one of the most important questions we can ask ourselves is this:
What happens when the people we hope to inform become partners in creating the solution?
That question guided our co-design process for The Grand Experience Podcast, a project developed to support grandparent caregivers and grandfamilies.
More Than Reviewing Questions
Our co-design committee brought together individuals with different forms of expertise.
Some were grandparents raising grandchildren.
Some had been raised by grandparents.
Others worked in healthcare, education, social services, advocacy, and community organizations.
And some of us came as researchers.
What quickly became clear was that no single group possessed all the answers.
Grandparent caregivers brought lived experience.
Providers brought knowledge of systems and services.
Researchers contributed evidence and structure.
Together, we created something none of us could have designed alone.
The Moment That Changed My Thinking
As committee members reviewed interview guides, they repeatedly returned to three concerns.
First, people wanted stories that felt authentic.
Second, they wanted practical guidance.
Third, they wanted hope.
Again and again, participants emphasized that grandparent-caregivers do not need another reminder of how difficult life can be. They already know.
What they need is validation.
They need to know they are not alone.
They need information that helps them take the next step.
And they need reminders that things can get better.
The committee eventually helped us articulate three questions every episode should answer:
- Am I alone?
- What can I do next?
- Can things get better?
Those questions may sound simple.
But they capture some of the deepest needs facing grandparent caregivers.
A Lesson About Human-Centered Design
One of the core principles of human-centered design is that solutions should be developed with people, not for them.
That sounds obvious.
Yet many programs, interventions, resources, and services are designed in ways that unintentionally overlook the perspectives of those who will ultimately use them.
Our co-design process challenged that tendency.
Participants encouraged us to use plain language.
They asked us to reduce jargon.
They encouraged interactive formats and resource sharing.
Most importantly, they asked us to remember that every listener is a person navigating real-life challenges involving finances, education, healthcare, family relationships, legal systems, and emotional well-being.
What We Are Learning
This process reinforced several important lessons.
Listening is an intervention.
When people feel heard, valued, and respected, trust grows.
Lived experience is expertise.
The knowledge gained through daily caregiving responsibilities is every bit as valuable as professional expertise.
Hope matters.
People are more likely to engage with resources when they leave feeling empowered rather than defeated.
Research becomes stronger when communities shape it.
Co-design does not weaken rigor. It strengthens relevance.
Why This Matters Beyond One Podcast
Although this project focused on grandfamilies, the lesson extends far beyond caregiving.
Whether we are developing health programs, conducting research, creating policies, or designing educational initiatives, the people most affected by those decisions should have a meaningful role in shaping them.
Community engagement should not be the final step.
It should be the foundation.
When that happens, we move from creating solutions for communities to creating solutions with communities.
And that distinction changes everything.
Final Reflection
At the end of our co-design process, I left with far more than recommendations for a podcast.
I left with a deeper appreciation for the wisdom that exists within communities.
The most effective solutions often begin not with an expert’s answer, but with a genuine question:
What can we learn when we listen first?
If the people most affected by a problem helped design the solution, how might your work look different?