The Best Lessons in Self-Care Come From Peers with Spinal Cord Injury

Tom Chipps was feeling a bit off, like he had to go to the bathroom, but couldn’t. Just the week before, in a peer-based class on self-care at Shepherd Center, former patients with spinal cord injury (SCI) talked about what could go wrong with bladder management. That lesson was a lifesaver.

Tom, 63, has a C-4 level of injury and is dependent on others for his care because he has no functional hand movement. He is still participating in rehabilitation months after a car accident and realized his discomfort could be a sign of a serious problem. As he had learned in class, he knew he needed to alert someone that he may be having signs of autonomic dysreflexia. The nurse took his blood pressure, which has very high, and did a catheterization for him to relieve his extremely full bladder. This sent his blood pressure plummeting, but again, thanks to the class, Tom knew to lean back in his chair and wait for it to stabilize.

“The class was taught by individuals who live that every day,” said Tom, who is from Beckley, W. Va. “They talked about their personal experiences. That’s how I knew what was going on.”

Shepherd Center revamped its SCI patient education program in 2015 as part of an emphasis on patient-centered care. Each patient was assigned to a one-hour class each day for one week during their rehabilitation. The classes cover bowel and bladder management, skin health and other concerns, such as high and low blood pressure, autonomic dysreflexia, blood clots, muscle spasticity and respiratory issues. The new approach involves a team of peer mentors, who are three to 18 years post-injury, to share information in a more conversational way.

Nurse educators still participate to provide medical advice, but peer educators lead the classes, which begin with a short introductory video that was created by these peers with SCI for others with SCI. They emphasize multiple options for self-care tasks, such as bladder and bowel management, and good self-care techniques. Then, patients discuss issues of concern to them that are peppered with personal stories from the peers leading the class. They discuss warning signs and how to resolve issues. The peers are able to laugh about past mishaps, and their humor helps to diffuse patients’ anxieties. They give patients advice about how to deal with a range of potential problems – and confidence they will be able to cope. In fact, the peer mentors’ overriding theme is, “Be your own hero.”

The new format has proven itself highly effective in delivering self-care information, said Julie Gassaway, MS, RN, Director of Health and Wellness, who led the study and presented results at a recent meeting of the American Congress of Rehabilitation Medicine. Researchers analyzed videos of the newly designed classes, as well as traditional-type classes. They found significant differences in the number of visible signs of positive engagement from patients in the peer-led classes – signs such as asking questions, joining the conversation or nodding in agreement. Patients in the peer-led classes also were less likely to display negative engagement, such as looking at their cell phones or falling asleep.

Patients also responded more favorably to the peer teaching when asked which style they preferred. And they responded enthusiastically to the new paradigm, which includes multimedia presentations, personal stories and even games (such as a take-off on Jeopardy dubbed “Shepherdy”). More than 97 percent of patients said they preferred the new approach and considered themselves more active and engaged in peer-led classes.

Switching from nurse-led to peer-based education was a significant new step in moving toward patient-centered care and providing educational information that responds to patient readiness. Patients often expressed a feeling of being overwhelmed by the magnitude of information they received during traditional education and the “big binder” they took home, Gassaway noted.

That detailed content remains available on Shepherd Center’s patient education website MyShepherdConnection.org for patients and families to access at a time when they feel ready to do so. They may also access all videos and interactive content used during the peer-led patient education classes on the same website.

“The difference we see in our patients is so powerful,” Gassaway said. “We’re infusing the peer mentor process into the Shepherd Center culture.”

Researchers followed patients for 180 days post-discharge to determine if patient-centered care initiatives, including the peer-led classes, have an effect on hospital readmissions or emergency room visits. Those results are still being analyzed.

The study and Shepherd’s four-member peer mentor team are funded by grants from the Patient-Centered Outcomes Research Institute (PCORI) and the Robert W. Woodruff Foundation.

Since its founding in 1975, Shepherd Center has placed a high priority on using peer mentors to help patients transition to their “new normal.” The grants enabled the hospital to expand that effort, and today, the full-time peer mentors, in addition to leading patient education classes, take a broad role, doing therapy demonstrations, joining patients as they venture into the community to dine or shop, and accompanying teens on college tours. Some 250 community members volunteer to interact with patients and share their experiences of living with spinal cord injury. Thousands more connect through Facebook as Shepherd SCI Peers and other social media sites.

“At a time when your future may be unforeseeable, here you have people who may represent that [new life],” said Pete Anziano, an instructional designer and peer mentor liaison who was injured 11 years ago in a motorcycle accident. “That’s who you want to get your information from.”

Patients ask practical questions and gain valuable ‘experiential’ knowledge from the peers who become their role models. “We want our patients to realize that when they leave Shepherd, they will still be able to pursue a path to happiness within their ‘new normal’ of living with their spinal cord injury,” Anziano added.

By Michele Cohen Marill