Expanding knowledge about spinal cord injuries
Work to set up a center of competence for spinal cord injuries began four years ago. Since then, although COVID-19 has slowed progress, much has happened. For a start, a major knowledge survey about spinal cord injuries (SCIs) has just received the go-ahead, peer health coaches have been trained, and a network for younger researchers working on SCIs is being supported.
Ryggmärgsskadecentrum is facilitated at Högsbo Hospital. It has no official English name, but directly translated it could have been called 'The Gothenburg Spinal Cord Injury Center'. Like many others, project manager Gunilla Åhrén works from home because of COVID-19.
“The work will go on anyway,” Åhrén says. “We recently got the green light for Sweden’s biggest survey of SCIs ever. The aim is to identify where the knowledge gaps in research are and which needs must be met so that people with SCIs can live a more independent life. All those concerned — the injured, their close relatives, assistants, and nursing staff — participate and contribute on equal terms throughout the process.”
During the spring, the first “peer health coaches” (who have themselves been injured in the same way) were trained in how to coach others. They meet recently injured people for a limited period, with the goal of supporting them in getting “back to life” after inpatient primary rehabilitation during their initial, often chaotic, time back home.
“The peer coaches vary in terms of geography, age, and injuries. Only someone who has experienced trauma similar to that of an injured person can understand what it’s really like,” says Gunilla Åhrén.
Both Sahlgrenska University Hospital and Sahlgrenska Academy collaborate with user organizations through the Spinal Cord Injury Center.
New advanced course
Katharina Stibrant Sunnerhagen, Professor of Rehabilitation Medicine and Senior Consultant at Sahlgrenska Academy’s Institute of Neuroscience and Physiology, University of Gothenburg, was one of the initiators of the Spinal Cord Injury Center. She describes a new advanced course on SCI rehabilitation that the Center is providing jointly with the development unit at the Department of Clinical Neuroscience.
“The course has put both the Gothenburg Spinal Cord Injury Center and Sahlgrenska Academy on the map in the Nordic region. It’s also been presented at both Nordic and international conferences; and ISCoS, the International Spinal Cord Society, has shown great interest in the new concept.”
In collaboration with the Spinal Cord Injury Center, Sahlgrenska University Hospital can demonstrate the expertise available in the specialty and use it to improve life for people with SCIs, in the region and nationwide, Sunnerhagen believes.
“For the Academy, it’s an opportunity to establish a network of SCI researchers in Sweden and abroad, starting with the network we’ve created for younger researchers, but also with our international advisers.”
Knowledge for those who need it most
One researcher in this network is Lamprini Lili, who belongs to Sunnerhagen's research group.
“As a doctoral student, I’ve been able to work with active researchers through the network. The Spinal Cord Injury Center benefits me as a clinician, too, by spreading knowledge to those who need it most. This makes the patients better equipped to keep track of their own difficulties, which makes our monitoring job more efficient,” Lili says.
“My dream is that the Center should be able to train and provide certification in breathing skills so that there are at least two people working during each shift, in every emergency department in Sweden, who are well informed about the breathing aspect. It would benefit not only people with SCIs but also other patients, such as COVID sufferers, for example,” Sunnerhagen says.
The Spinal Cord Injury Center is run by, first, the Institute of Neuroscience and Physiology at the University of Gothenburg and, second, Sahlgrenska University Hospital, jointly with Region Västra Götaland, with support from the Sten A Olsson Foundation for Research and Culture.
Ryggmärgsskadecentrum (in Swedish only)
Sten A Olsson Foundation for Research and Culture