Shepherd Center Revamps its Spinal Cord Injury Education and Peer Support Programs

Julius Caesar once said, “Experience is the teacher of all things.” This old adage holds true when it comes to adjusting to and learning how to live with a spinal cord injury (SCI). And it seems learning from and being coached by a peer – someone who has experience managing many of the complications that can arise from an SCI – may be a very effective way to prepare patients to return home.

Leveraging and engaging peer mentors throughout the rehabilitation process is at the heart of a three-year project headed by Shepherd Center’s Julie Gassaway, MS, RN, and funded by the Patient-Centered Outcomes Research Institute (PCORI) and the Robert W. Woodruff Foundation.

Now in its second year, the PCORI/Woodruff-funded project has already allowed Gassaway and her team to revamp the way patients are educated about their injury and how to successfully manage issues such as bowel, bladder and skin health after leaving the rehabilitation setting.

Beginning in January 2015, all patients began attending an education week, which includes one-hour classes for four consecutive days covering different topics. Classes are facilitated by nurse educators, but led by peer mentors who have been living with their injury for three to 20 years. These sessions are designed to stimulate discussion about personal care topics and provide a forum for sharing practical tips and concerns.

“It’s been a huge shift from traditional ways of educating our patients,” says Gassaway, director of health and wellness and PCORI grant co-investigator.

Because these new educational modules are being rolled out in stages, it has given the research team an opportunity to record the sessions on video and count points of positive and negative engagement. Positive engagement involves how often patients participate in conversation, ask questions or nod/gesture/raise their hand; whereas instances of using a cell phone or falling asleep are interpreted as negative engagement. After the last class, each participant is interviewed and asked:

1. Which classes were most informative and engaging;
2. Why and what style of class helped to strengthen their understanding of a topic;
3. If they had any unanswered questions after any class and why that might be the case.

“This will allow us to compare the old and new approaches. But there are already striking differences,” Gassaway says.

“The peer-led classes are more engaging and infused with a bit of humor; patients participate frequently in the open discussions and ask questions that are of concern to them,” she says. “And when you are helping people with these kinds of injuries, there is no better motivator than someone who is living it well and leading a happy and productive life.”

The goal is to equip patients with the knowledge, skills and confidence to recognize early warning signs of any medical issues so they can address them quickly and avoid return visits to the hospital. But it’s also meant to provide the foundation to manage their care effectively so they can be active in community life.

The grants have also paved the way for a randomized, controlled trial now under way that will compare outcomes (for example, the ability to self-manage conditions at home, emergency room or hospital visits, and involvement in the community) when patients receive frequent peer support versus those who receive less. A total of 160 patients are enrolled in the study and assigned to an intervention or control group randomly.

“We are pioneering a new approach with peer interaction,” Gassaway says. “Patients are able to relate to and share experiences with others who have dealt with similar adversity and learned to live active, productive and happy lives.”

Shepherd Center’s collaboration with Craig Hospital in Denver to form a National Center of Excellence has also opened opportunities for additional input on enhancing educational materials and to disseminate information. Together, the two hospitals are exploring options for creating a secure patient portal; this virtual resource will give patients and caregivers one-stop access to credible, up-to-date information, prescription refill requests and messaging.

For more information, see MyShepherdConnection.org or contact, Julie Gassaway, MS, RN, director of health and wellness at 1-404-350-7637 or Julie_Gassaway@shepherd.org.

Written by Amanda Crowe, MA, MPH