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Students help Blugold Brain Injury Group members tell their stories to health care providers

| Judy Berthiaume

Photo caption: Undergraduate and graduate students in UW-Eau Claire’s communication sciences and disorders programs assisted Blugold Brain Injury Group members in developing a presentation for Mayo Clinic Health System providers. In the presentation, BBIG members told providers what it’s like to live with a traumatic brain injury. Blugolds helping with the project include (seated from left) Bailey Harder and Crystal Zehm, and (standing from left) Dr. Jerry Hoepner and Hannah Yingst.

Several Chippewa Valley community members — all part of the Blugold Brain Injury Group (BBIG), a support group through the University of Wisconsin-Eau Claire communication sciences and disorders department — recently shared personal stories with area health care providers about the day-to-day realities they face as they live with traumatic brain injuries.

In their presentation, they described how, after falls and accidents, they are leading “different but mostly normal lives” while coping with their own distinct challenges, including issues like memory loss, cognitive challenges and physical limitations.

They also shared with the more than 60 Mayo Clinic Health System providers attending the Mayo Academic Rounds presentation their ideas for improving care for patients who are living with brain injuries, such as connecting them to support groups like theirs at UW-Eau Claire and the Mayo Traumatic Brain Injury Group of Eau Claire.

“Our group members were spot on,” says Dr. Jerry Hoepner, a professor of communication sciences and disorders who oversees the BBIG program. “The presenters eloquently balanced discussing the struggles they face along with hope and what it takes to live successfully with a brain injury.

“They achieved their goal of conveying what physicians, nurses and other providers need to know about the long-term consequences of brain injuries and the need for ongoing support.”

The presentation, “Understanding the lived experience of brain injury: Implications for acute through chronic recovery,” was an incredible opportunity for the experts — who are the people living with traumatic brain injuries (TBI) — to advocate for themselves, while telling providers how they can better care for future patients with similar brain injuries, Hoepner says.

The providers were listening and are taking what they heard to heart, says Dr. Catherine Schmidt, a Mayo Clinic Health System provider who collaborated with BBIG on the presentation.

“This courageous group of survivors did an excellent job of showing what doing the hard work of rebuilding themselves results in and succinctly described how providers in all specialties can support them,” Schmidt says. “I was very proud of the excellent presentation and the grace and honesty of the presenters.”

Those attending the presentation appreciated the BBIG members’ specific recommendations and their bravery in telling their personal stories, Schmidt says.

“This presentation was another example of Mayo Clinic Health System and UW-Eau Claire working together for the benefit of our community,” Schmidt says.

Creating student experiences

The presentation also was an incredible opportunity for UW-Eau Claire undergraduate and graduate communication sciences and disorders student clinicians, who spent months supporting BBIG members as they decided what and how to present their information to the health care providers, Hoepner says.

“For the students, it was a great opportunity to draw out the ideas and then help the presenters to reformulate those ideas into a concise, clear and coherent message,” Hoepner says. “They spent hours in small group sessions forming and refining the messages with the presenters. I can’t say enough about the amazing work of the students. They created authentic, professional relationships with the members/presenters and helped them to hone the presentation into a really poignant message.”

BBIG selected five group members to do live virtual presentations and three others to record messages to be played during the event. Students then worked with them to craft and present their messages.

Hannah Yingst, a senior from Colfax who will graduate in May with a degree in communication sciences and disorders and a minor in psychology, was among the student clinicians who did the behind-the-scenes work to help keep the presentation project moving forward.

She and other student clinicians helped to provide goals and objectives, tailor presenters’ sections, provide ideas and resources, and facilitate the editing process, Yingst says. And, when that work was complete, they helped arrange a series of virtual practice presentations in front of family, friends and students at UW-Eau Claire and several other campuses as far away as London, she says.

The idea for the presentation came after Kathleen Spreitzer, then a graduate student at UW-Eau Claire, wrote a master’s thesis on health care perceptions of people with TBI, Hoepner says. After Spreitzer, who earned her undergraduate degree in communication sciences and disorders from UW-Eau Claire in 2018 and her graduate degree in 2020, completed her thesis, BBIG members asked her to share her findings. The idea to talk directly with providers came from that discussion.

Shari Callaghan, a BBIG member, TBI survivor and Mayo Clinic Health System employee, contacted the Mayo Academic Rounds planners and got the project started. Other community presenters included Mark Ryder, Sheree Nelson, Katie Paulson and Terry Vokoun.

It was a joy to see the BBIG project grow from a small idea into a powerful presentation, Yingst says.

“Each presenter capitalized on their own acute and chronic experiences as well as shared techniques that worked for them,” Yingst says. “Between all the presenters, there are several years of experience that must be considered and valued.”

Joining the BBIG project was an invaluable learning experience as she prepares for a career in medical speech-language pathology, says Bailey Harder, a graduate student in UW-Eau Claire’s communication sciences and disorders master’s program.

After she joined the project last fall, she worked with BBIG members to solidify what they wanted to communicate to health professionals on their lived experiences of an acquired brain injury, Harder says. Smaller group meetings followed so they could rehearse and get feedback from one another, she says.

“As student clinicians, we facilitated self-reflection and supported feedback from all members of the group so the presenters could convey the content that the group agreed upon, while also sharing their own personal stories and ideas,” says Harder, who will graduate in May.

While students helped guide the project, it was the presenters who brought it to life, Yingst says.

“BBIG members worked endlessly to create a sincere and cohesive presentation,” Yingst says. “The experiences they shared communicated how they felt in their acute stage and how they feel now looking back on them in their chronic stages.”

During the presentation, student clinicians joined BBIG members in UW-Eau Claire’s Human Sciences and Services building to show their support during the live recordings, Harder says.

“I could not have been prouder to watch them eloquently execute each of their portions of the presentation,” Harder says. “The value of this presentation is beyond words. This project is meant to be the voice of those who have not been heard. They demonstrated resilience by advocating for themselves through an effective, and long-lasting presentation.”

The importance of support groups

Hoepner and the student clinicians say one of the messages they most hope providers take from the presentation is that groups like BBIG are incredibly meaningful for people living with brain injuries. Connecting their patients with support groups must be a priority, they say.

“I, personally, have a family member who recently had an acquired brain injury, and this group allows him to connect with those who truly understand,” Harder says of BBIG. “I believe health professionals have the ability to advocate for those who need services in the chronic phases of an acquired brain injury, and a support group is one of these key resources.”

That message clearly resonated with those attending the presentation, Schmidt says. Many of her colleagues already have reached out asking for informational material about BBIG and the Mayo Brain Injury Support Group, she says.

“The participants in the presentation had strongly recommended making these materials available throughout the clinic so people who know a person with a head injury can find out about these amazing peer support groups,” Schmidt says.

BBIG is an offshoot of the Mayo Traumatic Brain Injury Group in Eau Claire, which Hoepner and a then-colleague at Mayo Clinic Health System began more than 20 years ago. While Hoepner left Mayo Clinic Health System to teach at UW-Eau Claire, he stayed involved with the group.

In 2016, Hoepner started BBIG at the university after recognizing a need for even more opportunities for people with TBIs and a need for more student experiences. It is meeting those needs, he says.

“It has been a remarkable opportunity for students to learn from the experts, people with brain injuries, directly, especially gaining insights into the lived experience of chronic brain injury recovery,” Hoepner says. “Likewise, for group members, it gives them an additional three or four meeting times a month.”

Harder and Yingst agree, saying they will be more successful in their future careers because they learned things from BBIG members they could never have learned from a textbook or in a classroom.

Student clinicians support group members through cognitive communication techniques and, in turn, group members help educate future clinicians so they can begin to understand what it is like to have a brain injury, and what tools and strategies they know to be successful, Harder says.

“Hearing the stories, the discussions between members, and their willingness to help others and advocate, has taught me to listen to our clients and take their wisdom to heart,” Harder says. “I believe I am a better clinician today because of this group, and I could not have asked for better teachers.”

Yingst began working with BBIG as a freshman, and she continues to be amazed by the group four years later, she says.

The way they support each other is inspiring, as is their resiliency and efforts to empower themselves and each other, Yingst says of BBIG members.

“They leave me in awe at the end of every session,” Yingst says. “Every conversation and project they do teaches me more about the daily lives of people with traumatic or acquired brain injuries. The insight each member offers to the community and to each other is incredible. Working with BBIG has furthered my passion for working in a medical setting with adults who have acquired neurogenic disorders.”

UW-Eau Claire’s extraordinary program

Harder, who also earned her undergraduate degree in communication sciences and disorders from UW-Eau Claire in 2018, says she always knew she wanted a career in speech-language pathology. Her time at UW-Eau Claire has made her even more excited about her future, she says.

“I always had the drive to help others, but this program provided opportunities to reach others in ways I could not have imagined,” Harder says.

As a Blugold, Harder had opportunities to work with children in the Center for Communication Disorders and people with aphasia and their care partners at The Chippewa Valley Aphasia Camp, the Aphasia Exercise Program and Communication Partners.

These experiences also introduced her to the world of research, allowing her to present at the American Speech Language and Hearing Association Convention, as well as the inaugural UW-Eau Claire and Mayo Clinic Health System Collaborative Research Symposium, Harder says.

Those and other experiences are possible because faculty are excellent teachers who also are experts in their field, Harder says. They also see the value of providing real-world learning experiences, she says.

“Their passion for the field of speech-language pathology is projected onto their students through rich academic and clinical experiences,” Harder says. “By the time I had to decide on graduate school, I knew UW-Eau Claire would shape me into a confident, passionate and effective clinician because I had already witnessed the dedication to the field through my undergraduate experiences.”

Yingst says knowing that UW-Eau Claire offers these kinds of opportunities is why she became a Blugold.

“The opportunities are vast and unique,” Yingst says. “The faculty have been there for me since I was a freshman. They are all so knowledgeable in their specialties and help students find their niche within the field. They consistently support and provide their students with resources and set them up for success.”

Both graduate and undergraduate students are critical to the success of BBIG and other programs, Hoepner says. Involving students early in their college careers provides consistency and gives students like Yingst years of meaningful experiences while they still are undergraduates, he says.

“Hannah has been a remarkable gift to the group, and it has been equally remarkable to see her growth from her first summer between her freshman and sophomore year, when she was quiet and unsure how to interact, to a polished and skilled clinician who is among the best clinicians I’ve worked with in the group,” Hoepner says.

Harder and Crystal Zehm, who earned her undergraduate degree in in communication sciences and disorders from UW-Eau Claire in 2019 and now is in the graduate program, also are contributing greatly to the  success of campus and community initiatives, Hoepner says.

“They all are very skilled and adored by the Eau Claire brain injury community,” Hoepner says.

Hoepner, Yingst, Harder and Zehm will present the outcomes from BBIG to health care providers at the virtual International Cognitive Communication Disorders Symposium in Manchester, U.K., in April.