The long road of recovery after spinal cord damage

People who live with spinal injuries often say that the first year of recovery is the toughest—not only for them, but their caregivers as well.

But researchers and the people struggling with the recovery may actually have different interpretations of the reasons—especially military veterans.

The U.S. Department of Defense recently awarded researchers from MetroHealth Medical Center and Case Western Reserve University more than $800,000 to study the experiences and needs of veterans and civilians who have suffered spinal cord injuries.

An interdisciplinary team of researchers will interview veterans and civilians with spinal cord injuries—as well as their caregivers—during the first year of recovery as they attempt to reintegrate into the community.

"The early months after a life-changing spinal cord injury are completely foreign," said Kim Anderson, a professor in the Department of Physical Medicine and Rehabilitation at the MetroHealth Medical Center and the Case Western Reserve University School of Medicine. "Nobody prepares for this. How could they?"

The three-year study will compare the experiences of 15 veterans with SCI and their caregivers with the same number of civilians and their caregivers to identify the barriers and facilitators they experience as they attempt to access treatment options. Researchers will re-interview them six and 12 months later; they'll ask a series of questions that include what "recovery" means to each of them.

"'What is your definition of recovery?' If you ask someone right after they've had a spinal cord injury, they may say their goal is to walk again, but if you ask them a year later, they may give you a completely different answer because of what they've experienced," Anderson said. "Not everyone has the same goals, or the same ideas of recovery. In particular, people experiencing spinal cord injury may have a very different view of recovery than clinicians or scientists."

The project—called the "Perspectives on Recovery and Interventions to Restore Function Across the First Year of Spinal Cord Injury"—is a partnership between MetroHealth Medical Center, Case Western Reserve University, the United Spinal Association Northeast Ohio Chapter, and the Louis Stokes Cleveland VA Medical Center.

A novel project

"The idea is that this research will lead to more successful rehabilitation and community reintegration by including the perspectives of people affected by the injuries" Anderson said. "It's a pretty novel and innovative project. People living with this experience are shaping future research. So are their family members; it's important to keep in mind that a spinal cord injury happens to an entire family." The results may impact how to approach rehabilitation, but they may also lead to changes in policy to improve access to treatments.

Participants' responses will be recorded and categorized in specialized coding software to identify themes and patterns, said Anderson. Researchers expect the responses to change during the project as experiences and challenges shift for both the injured and their caregivers. They also expect the responses to be different between veterans and civilians.

Anderson, who primarily works with people with spinal cord injuries at MetroHealth, is joined in the research with Anne Bryden, an established occupational therapist at CWRU as well as a Ph.D. candidate in the sociology department at the College of Arts and Sciences; Sue Hinze, associate professor of sociology and women's and gender studies; Brian Gran, a professor in the department of sociology, as well as at the university's School of Law and the Jack, Joseph and Morton Mandel School of Applied Social Sciences; Mary Ann Richmond, chief of SCI rehabilitation, and Angela Kuemmel, a rehabilitation psychologist, both at the Louis Stokes Cleveland VA Medical Center.

"The comprehensive background of this interdisciplinary team is vital to the success of this project," Anderson said. "We all come with different expertise, from biomedical research to medicine to law and social science and social work to therapy."

Provided by Case Western Reserve University