Stronger Together

Access to peer support is an integral part of rehabilitation at Shepherd Center. One program, RISE, which stands for Resilience, Independence, Support, Empowerment (formerly KAYAC or Keeping Adolescents and Young Adults Connected), seeks to ensure that Shepherd’s adolescent patients have an opportunity to connect with true peers — former patients close to their age — and to study the impact of peer support.

Twenty-one-year-old Caleb Struble is a RISE mentor for spinal cord injury (SCI) patients and has been mentoring with the program since soon after it started in 2022. Caleb participated in rehabilitation at Shepherd after sustaining an SCI in 2021. At the time, he was considering studying law in college, but his focus shifted to psychology.

“I still have an interest in it (law),” Caleb explains, “But when I went to see Ms. Cheryl, (adolescent program rehabilitation counselor Cheryl Linden, MA, LPC; MS OT/L,) I saw how many people that are at a really low state in life get something truly rewarding out of just going and talking to somebody for 45 minutes to an hour — and seeing how many lives she could change on a daily basis, it seemed like that was a super-rewarding experience and path.”

Katie Harris Rains, Psy.D., rehabilitation neuropsychologist and principal investigator for RISE, says peer mentors complement the support a psychologist and other members of a patient’s care team provide.

“As a psychologist, I can talk with patients every day and empathize, but I have not lived what they are living. I haven't had to problem solve how to get back to school and everything that goes along with that, whereas our mentors have — and they've done it successfully,” she explains. “They've been there, done that, and they're close in age, and were close in age when they were injured. So, there's a different way of connecting and of understanding.”

Rains says that kind of support is especially important for teens and young adults.

“If you add in all the extra challenges associated with being a teenager or young adult that in and of themselves are a lot to deal with while you're also adjusting to a new injury or a new disability, there's just a need for folks who really get it and understand it,” she explains. “We connect our mentors and mentees when the mentee is getting closer to discharge, so that they have someone to bridge the gap between discharge and returning home … when they return home, the safety net of being with Shepherd patients and staff every day goes away, and then you can realize, ‘Oh, man, I really do need to talk with someone,’ or ‘I really do need more support with X, Y, or Z.’”

Becoming a Mentor

Former patients who are interested in becoming mentors complete online training tailored to adolescents and young adults. SCI mentors can complete training through the Christopher and Dana Reeve Foundation and are then eligible to meet with mentees through both the Reeve Foundation and Shepherd Center. Since the Reeve Foundation does not have a mentor program for individuals with acquired brain injuries (ABI), Shepherd staff developed training materials for ABI mentors. They also created a virtual course for SCI mentors in the event that they can’t attend training with the Reeve Foundation. Mentors must be 13 to 26 years old and at least a year post-injury.

Currently, the program has four mentors for SCI patients and one for ABI patients.

Eden Schroeder, 23, is a RISE mentor for SCI patients. She studied psychology as an undergrad and plans to continue her studies in graduate school. Her reasons for becoming a mentor are manifold.

“I knew that I wanted to continue to be involved in Shepherd, and Shepherd's done a ton for me, so I just wanted to give back in the same way that they gave to me,” she says. “Cheryl (Linden) pointed me in the direction of psychology, and she said, ‘You're able to connect really well with patients now as a patient, so imagine what you could do after you're a patient.’ And so honestly, yes, I wanted to make friends, but I also just wanted to see what my future career could be like. Also, I had no one my age when I was injured who was coming in to see me, so I think it would have been helpful if I saw somebody in their 20s still going to school, getting back to work, and swimming and stuff like that.”

Caleb remembers visits from David Carter, a member of Shepherd’s Peer Support team, while he was an inpatient.

“I think he helped me get a little bit of my confidence back, like all the therapists did,” Caleb says. “And just being so easy to talk to, he made it feel like it's not that big of a deal.”

There When You Need Them

Patients might not always feel ready to talk to a mentor while inpatient or even right after discharge. In fact, both Caleb and Eden said they were hesitant to talk to Shepherd’s peer mentors at first, which informs their interactions with potential mentees.

“I think the most challenging thing for me is going into patient rooms where a team's requesting peer support, but the patient might not be wanting the peer support or might have said, ‘Yes, I'll do this,’ but they just said it and don't actually want it or aren’t in the mood,” Eden says. “And I know exactly how that felt, because when I had the peer supporters come in, I was like, ‘I don't want to see you. I don't want to talk to you. Leave me alone.’ Sometimes, they open up to it once they see me or see Chippy (Eden’s therapy dog) but if I can tell they don't want anything to do with me, I'll be like, ‘OK, tell your team if you want to speak some other time — feel free to reach out’ and then I just kinda leave it at that — not be too pushy.”

Rains says that even if patients aren’t interested in connecting with a mentor when they discharge from inpatient rehabilitation, knowing that RISE mentors are available as a resource is important as they return to their homes, work, or school.  

“You may go home and for a few months think ‘I'm doing OK.’ And then you are returning to work and realize, ‘Whoa, it would be really nice to talk with someone who has done this.’ So it's bridging that gap and helping with that transition,” Rains explains. “So even just them being aware that this is something that they can use if and when they're ready can make a big difference.”

With the input of the current mentors and other former patients, Rains is also evaluating different platforms that could serve as a virtual resource for former patients. And she’s collecting feedback from mentees about the program to ensure it addresses their needs.

“We want to make sure that the program is creating a space where our young folks with these injuries feel understood, feel that they have someone they can reach out to who has been where they are,” Rains says.

For mentors like Caleb and Eden, participating in the program is gratifying.

“It’s rewarding to know that I'm helping somebody,” Eden explains. She says that she often shares practical tips on navigating life with an SCI with her mentees.

“It makes me feel good to know that even small things can make huge impacts later on.”

For more information about RISE or to participate as a mentor or mentee, email katie.harris@shepherd.org.

Written by Ruth Underwood