Anestis Divanoglou, Marika Augutis, Thórarinn Sveinsson, Claes Hultling, Richard Levi
Department of Physical Therapy, School of Health Sciences, University of Iceland, IS-101 Reykjavik, Iceland. E-mail: anestis.divanoglou@gmail.com
DOI: 10.2340/16501977-2383

Objective: To explore self-reported health problems and functional goals in community-dwelling individuals with spinal cord injury in Sweden.
Design: Cross-sectional descriptive study that used a survey designed by an experienced peer mentor with spinal cord injury.
Subjects: Community-dwelling individuals with spinal cord injury from Sweden.
Methods: The survey was distributed online by the community peer-based organization RG Active Rehabilitation.
Results: A total of 203 individuals (55% males, 90% acquired spinal cord injury) from all regions in Sweden completed the survey. Of these, 33% reported living with > 2 unbearable physical or psychological problems. While some problems (e. g. problems related to bladder and balance) were consistently ranked to be common across all years since injury and type of spinal cord injury, distribution of some other unbearable problems (e. g. type of pain, excessive weight) varied between subgroups. Years since injury, level of acquired spinal cord injury and sex,
but not age-group or type of spinal cord injury, explained some of the variation in the goals.
Conclusion: The high proportion of reported “unbearable” problems point to the stronger need for systematic, comprehensive, life-long, multi-disciplinary follow-up for people with spinal cord injury. The high rate of goals related to improving strength and fitness across all participants independently of their characteristics highlight the important role of community organizations that offer such lifetime services.

This study confirms that people with spinal cord injury (SCI) often live with unbearable health problems and need ongoing support and services. The study also showed that there is an enduring need for programs focusing on strength, fitness and balance training. Findings highlight the importance of involving peer mentors in strategies to manage these problems and needs. We used data that were collected online by a community organisation offering peer-based training programs for people with SCI in Sweden. The survey was designed by a peer mentor and asked people with SCI to identify their health problems and prioritize their goals. Providers of community rehabilitation programs for people with SCI in Sweden can use the information presented in this study to inform the design and focus of their services. The design of this study is an example of how community organisations can play a key role in reaching and evaluating people with SCI in the community.