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Photo: Mats-Erik Bjerkefors

"My body has started to strive against me"

Published: 30 June 2015

This is part of a quote in a dissertation about how participation in everyday life changes for persons ageing with a traumatic spinal cord injury. Ulrica Lundström's research shows that the participants experienced a growing imbalance in everyday life as a result of changes in their health and the lack of support from society to help these people to participate in everyday life.

– The results show that there is a need for a multi-professional team that collaborates to support the individual, but also that the society needs to revise laws and policies to promote participation in everyday life, says Ulrica Lundström, researcher in occupational therapy at Luleå University of Technology.

Premature aging

It was not until after World War II that persons with traumatic spinal cord injury survived and could begin to grow old with this injury. For a long time, spinal cord injuries were considered to be a relatively static condition, meaning that persons with a SCI would maintain their functional level for most of the remainder of their lives. Resent research has found a premature aging of this group, with an increased risk of for example diabetes and cardiovascular disease, but also an increased severity and frequency of some symptoms and diseases. Pain, muscle weakness and chronic fatigue are also complications that have been described by persons who are aging with spinal cord injury.

Security replaced by imbalance

According to Ulrika Lundström's research result showed that with the help of rehabilitation and role models the participants were inspired not to be limited by the spinal cord injury. Instead it helped them to develop an ability to act and could, for example, return to work and have an active leisure time.

For about 10-20 years, participants had a comfort zone where they knew how to compensate for their spinal cord injury in everyday life. After 20-55, their participation in everyday life began to change. Participants described how pain, muscle weakness and fatigue affected the opportunities to participate in activities. They tried to act and make active choices to, for example, be able to work, but they lacked knowledge. Participants experienced an imbalance in daily life as a result of changes in their health and lacked support from the health system and society to continue to participate in activities.
– There is for instance no opportunity to expand personal assistance or receive funding for a customized car after the age of 65, says Ulrika Lundström.

Team supports the individual

The results of the research show that there is a need for regular contact with a multi-professional team, who collaborates and have good knowledge of the needs that may arise through the lives of persons who are aging with spinal cord injury. Ulrika Lundström believes that every profession should review what actions can be effective and create appropriate action programmes.
– For occupational therapists, it can be about investigating how assistive devices and energy conserving techniques can reduce pain and fatigue, but also enable the ability to participate in activities.

She believes that there is a need to investigate society's laws and policies, as in the current situation does not support these individuals´ opportunities to participate in activities after the age of 65.
– It is very different where in the country they live, and everyone should have the same rights to participate in their everyday lives.