Desire for Information Common for Spinal Cord Injury Patients
By Susan Christensen
Health and Research News Service
Call it a common conundrum of the rehab setting.
When spinal cord injury (SCI) patients have the greatest access to health care information, they’re often too shell-shocked to take it all in.
“I was hearing it, but I wasn’t hearing it,” said Adrian Benson of Canton, who came to Methodist Rehabilitation Center after a car wreck left him a paraplegic. “I was just ready to get out of the hospital. Being paralyzed … it took some time for that to sink in.”
Only later did Benson begin craving more knowledge about his condition, an experience that is hardly unique.
In a recent Methodist Rehab study, a majority of participants reported a need for information even years after discharge from an acute care setting.
“The respondents were most concerned about issues related to aging, research, financial aid and education,” said neuropsychologist Dr. Sam Gontkovsky, a scientist at Methodist Rehab’s Center for Neuroscience and Neurological Recovery. “Non-white participants in particular reported a significantly higher need for information in a variety of categories.”
Dr. Gontkovsky said it’s not surprising that aging would top the list of subjects that most interested SCI patients.
“People with SCI are generally living longer due to improvements in care over the past two decades,” he said. “It’s natural that this population would want to seek out information that could help them avoid some of the common medical complications associated with aging.”
A desire for research data also is understandable, given that medical advances often herald therapies that improve functional limitations. “We alsoknow from past studies that many people with SCI are keenly interested in research that might provide a ‘cure’ for paralysis,” Dr. Gontkovsky said.
Dr. Gontkovsky said the reported need for financial aid info is probably indicative of the high rates of unemployment among individuals following SCI and a lack of awareness about assistance from existing benefit programs.
Study participants also expressed a need for more general education, and Dr. Gontkovsky said future research should focus on breaking this broad category into specific aspects of education.
“I think what this study shows us is that we need to learn more about why the lifelong information needs of SCI patients aren’t being met and how that disparity influences outcome. In light of decreasing lengths of inpatient stays, developing strategies to meet the perceived information needs of people with SCI may be especially critical.”