Self-reported health problems and goals in community-dwelling patients with spinal cord injury in Sweden

doctor reviewing brain scans

People who suffer spinal cord injury (SCI) commonly experience physical impairments, pain, and other debilitating complications that can seriously reduce quality of life. Those with SCI typically require long-term health care services to manage their injuries and benefit from peer support. Currently, community organizations are the major provider of support for individuals with SCI, who benefit from the social networking opportunities, recreation, and social support that are provided by SCI-targeted community programs. However, little research exists regarding the specific needs, health problems, and goals of community-dwelling individuals with SCI.

A recent Swedish study addressed this knowledge gap by administering a survey to members of RG Active Rehabilitation (RGAR), a peer-based community organization which provides services for physical, emotional, and independent living needs for those who need ongoing support after SCI. RGAR provides counseling, training programs, one-on-one mentorship, and disability awareness activities. More than 200 members of RGAR completed the survey, which included questions about physical and psychological problems, their goals for recovery and for the future, and other demographic questions. After analyzing the responses, the research team found that:

  • One-third of individuals with SCI reported unbearable physical or psychological problems as a result of their injuries.
  • Problems with balance and bladder control were common across the respondents, regardless of their injury severity or the time elapsed since the initial injury.
  • Common goals included increasing fitness and strength.

Community organizations are a valuable resource for support after SCI. However, there remains a need for systematic, comprehensive, ongoing follow-up protocol for people with SCI, who may struggle to manage their injury-related complications and conditions. The researchers advise increasing programs for peer mentorship, as face-to-face interventions can promote independent and healthy lifestyles for people with SCI.

Divanoglou A, Augutis M, Sveinsson T, et al. Self-reported health problems and prioritized goals in community-dwelling individuals with spinal cord injury in Sweden. Journal of Rehabilitation Medicine. (September 2018).

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