Readying Patients and Families for the Realities of Returning Home

For many people recovering from spinal cord injury (SCI), returning home after being in the hospital is a big step in their rehabilitation. But it is not always an easy one. Suddenly being outside of Shepherd Center’s structured and supportive environment can be daunting for many patients and families.

“Patients feel good about going home, but when they get there, they often feel lost and overwhelmed,” says Mike Jones, Ph.D., vice president of research and technology at Shepherd Center. “They now have their injury plus the pressures of daily life, and they are hit with the realization that they can’t do everything they used to do.”

In addition, many people with SCI still have acute medical needs that must be managed post-discharge. For example, they might need a feeding tube or catheter, so they need to know how to problem solve and what to watch for to avoid problems.

Patients typically do not lack information or even the skills to care for themselves by the time they are ready to go home, but they may not feel confident making decisions independent of their treatment team, Jones explains. He likens it to the panic that can set in for new parents when bringing a newborn home from the hospital. For the first time, no one is around to help coach them or reinforce their decisions about how to care for this new little life. For people with SCI, feeling ill-prepared can lead to return visits to the hospital (called readmissions) and other problems.

Now, thanks to a new grant from the Patient-Centered Outcomes Research Institute (PCORI), Jones and his team will evaluate the effect of several hospital-wide changes aimed to build patients’ self-efficacy—the belief that they can effectively manage their care.

These include efforts to:

1. Expand Shepherd Center’s peer mentoring program so patients can readily connect with and learn from other people with SCI both at Shepherd and after discharge.
2. Revamp the way patients are educated about SCI and its complications by shifting from passive, lecture-style teaching to a “flippedclassroom” approach in which patients and families review information online and then come to class ready to discuss and apply what they’ve learned with their peers.
3. Develop patient portals that will include personalized medication lists, education and guidance on specific issues (e.g., bladder, skin) and access to peer discussions.

With the near $1.5 million PCORI award, researchers will be able to collect extensive data to determine whether these interventions affect hospital readmissions, medical complications, and compliance with doctor visits and medications post-discharge. Patients included in the study will be evaluated 30, 90 and 100 days post-discharge and again at one year.

“SCI affects all body systems, so when patients go home, there are a lot of ways to get into trouble with their health,” says Sarah Morrison, PT, vice president of clinical services. “Our job is to prevent that from happening.”

The hope is that by offering interactive education sessions, providing individualized online tools and linking them with peers who have faced similar experiences, patients will be better equipped to make health decisions to stay healthy and prevent problems once they are on their own.

“We want to boost their ability to manage their condition,” Jones says. “The way health care is going, the more control and confidence they have to manage their care, the better so they don’t rely on the healthcare system to
meet those needs.”

This work will also help shape Shepherd’s discharge planning and post-discharge supports for patients and families.

Written by Amanda Crowe, MA, MPH
Photography by Louie Favorite