The conference was wonderful! I always enjoy sharing the patient perspective with the audiologist community, and this time was no exception. It was terrific to learn from other advocates and to hear the latest research and ideas to improve care for people with hearing loss. I also had the chance to demo Auracast—as did my husband with typical hearing. More on that experience in a later post as well.
The Idea: What If Students Met Us Before They Treated Us?
For most people with hearing loss, an audiologist is the first hearing care provider they ever see. That one relationship can shape our entire hearing loss journey — whether we feel like a person or a patient, whether we feel rushed toward a device or actually heard. Whether we take that first step on the journey toward better communication, or press the pause button, perhaps for years.
Dr. Kathleen Cienkowski, Associate Professor and Program Director of Audiology at the University of CT and I wanted to know: what happens if we provide audiology students with a chance to understand our lived experience before they start treating us professionally? Not from a textbook, but from us, in our own words. So she built two things into her graduate-level hearing aids course at UConn.
First, a book review. The students read Hear & Beyond: Live Skillfully with Hearing Loss, the book Gael Hannan and I wrote, and I joined their class via Zoom to talk with them about it on day one.
Second, a real-world encounter. Every student attended an in-person Hearing Loss Association of America (HLAA) meeting and wrote a reflection afterward about what they experienced.
What They Told Us
We hoped the students would get a better understanding, not only of our lived experience, but also about the importance of communication access and advocacy. And they did.
After reading the book, one student wrote that it “should be studied and read by clinicians so we can understand how people cope before coming to see us for the first time, and how our clinical choices are interpreted, whether right or wrong.” Another shared, “We learn in our classes about the struggles and problems for people with hearing loss, but sometimes I feel like we have lost the human aspect.” And one wrote something I think everyone of us wishes our own audiologist understood from day one: that patients “deserve to participate in their life.”
The HLAA meeting was just as impactful. One student realized how little she actually knew about the resources available to us once we walk out of the clinic door — the support groups, the advocacy organizations, the community that exists beyond the hearing aid fitting. Another wrote that the experience changed her whole sense of what her job would be: not just to serve people with hearing loss clinically, but to support us as we move through a world that so often isn’t designed with us in mind. Wow!
Why this is Important for Person-Centered Care
If you’ve ever sat across from a provider and felt like just a set of ears, this is the antidote. These are the people who will be fitting hearing aids and counseling new patients in a few years, and they left that HLAA meeting thinking about the whole person and all the parts of our journey that happen far away from a sound booth.
Reading the book had the same effect. Plus it provided street-tested, community-inspired strategies for better communication. If audiologists can share some of these with us early in our journeys, our hearing devices will be more effective. And our journeys will be easier.
Powerful for People with Hearing Loss, Too
Community-engaged learning, the official name for this type of educational experience, is beneficial for our community, as well. When we share our stories — whether it’s through a book, a support group meeting, or just a conversation — we’re not only helping ourselves process our own experience. We’re shaping how the next generation of clinicians sees us. We’re making sure the psychosocial and emotional sides of hearing loss, the parts that don’t show up on an audiogram, get taken seriously in the exam room.
It’s also a reminder that our lived experience has real value and real authority. We are the experts on what it is actually like to live with hearing loss. Programs like this one tell students that our expertise matters just as much as the clinical literature.
What You Can Do
If you’re part of an HLAA chapter or another hearing loss community group, know that opening your meetings to students — even occasionally — can plant something that lasts a whole career. And if you’re a hearing care provider or professor of audiology, consider whether there’s a way to bring patient voices into your own training programs, even informally.
My thanks to Dr. Kathleen Cienkowski for partnering with me on this, to the UConn students who showed up with such open hearts and minds, and to the HLAA members who welcomed them in. If you’re curious about the research side of this project, you can find the full paper here.
Communicating better, not just hearing better — that’s the shift we’re all after. It turns out it’s a lesson worth teaching early.
Readers, do you share your story and life experiences with audiology students?
Related Posts
Connect with us on Facebook and Twitter!