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Individual experiences of people with spinal cord injury in Switzerland

Author of summary: Andrea Glässel (Swiss Paraplegic Research)

Original article: Lüthi H, Geyh S, Baumberger ME, Dokladal P, Scheuringer M, Mäder M, Cieza A. The individual experience of functioning and disability in Switzerland – patient perspective and person-centeredness in spinal cord injury. Spinal Cord. 2011;49(12):1173-81.
People with spinal cord injury in Switzerland are reporting in group discussions about their individual experiences.

What was the aim of this study?

Goal of this study, that was conducted throughout Switzerland, was to gain an insight into those experiences of people with spinal cord injury (SCI) that play a central role for disability and health from their point of view. Basis for this survey was the comprehensive perspective according to the International Classification of Functioning, Disability and Health (ICF) by the World Health Organization (WHO).

How did the researchers proceed?

49 people with SCI participated in nine group surveys in so called focus groups. 21 participants had suffered from SCI only recently while 28 people had been living with SCI for many years. All participants attended the group survey on a voluntary basis. People with a high level of SCI that were dependent on respiratory aids or that were suffering from a psychiatric condition such as depression, were excluded from the study.

Within the groups, the participants were discussing the following five questions with respect to their individual lived experiences with SCI:

  • If you are thinking of your body and mind, what does not work the way it should?
  • If you are thinking of your body, in which areas do you experience problems?
  • If you are thinking of everyday life, which problems do you experience?
  • If you are thinking of your environment (surrounding) and your life conditions:

          -  What do you find supportive and helpful?
          -  Which barriers do you experience or do you need to overcome?

  • If you are thinking of yourself, what is important for you and the way you are dealing with your SCI?

The statements of the participants within the group discussions were transcribed word-for word, partitioned into meaningful units and eventually linked to the categories of the above mentioned Classification of Functioning, Disability and Health (ICF).

The following example shows the procedure when analysing the statements from the group discussions:

Participant’s statement Text analysis step 1:
Meaningful units
Analysis step 2: Linking with ICF categories
„My wife is always there for me, she helps me with my daily routine, as for example with putting on clothes and taking off clothes.” 1) My wife is always there for me
2) Help with daily routine when putting on clothes or taking off clothes
Support from wife (e310*)

Putting on clothes (d5400*)
Taking off clothes (d5401*)

*These codes of a combination of letters and numbers are characteristic for the ICF. They have a supportive function when describing topics about disability and health.

What did the researchers discover?

Within the groups, the 49 participants were discussing with each other for more than 14 hours and were exchanging their experiences with SCI. This was transformed into 1,582 meaningful units that could be linked to a total of 2,235 categories of the ICF. The participants’ average age was 45.1 years; three quarters thereof were male.
The 2,235 categories can be summarized under four large areas:

  • Body (functions and structures)
  • Activities and Participation
  • Environmental Factors
  • Personal Factors (e.g. life style, coping with health conditions, life experience)

The following three categories were mentioned most frequently:

Category Example of a participant’s statement on this
1. Muscle tone (muscle tension) „Sitting for a long period makes me feel stiff and tense, it pulls in my legs.”
2. Muscle strength „I can move my arms only with a lot of effort, my hands are completely paralyzed.“
3. Pain „This back pain, it never stops”.

Differences regarding the discussion contents were found within the above mentioned groups. Within the group of those who had suffered from spinal cord injury only recently, the topics “movement of the joints” and “social life” were mentioned more often. The topic “helping others”, on the other side, was more important in the group of people who had suffered SCI a longer time ago. Of central meaning for the participants were, besides body related topics, especially barriers in the environment, support through aids and the social environment as well as the influence of SCI on all areas of life, e.g. leisure time and work.

How are the results applied?

The study was providing the “Swiss perspective” for a large project which examined the individual experiences of people with SCI in several countries worldwide. This project, together with three other studies, was the basis for the development of the ICF Core Sets for Spinal Cord Injury. Thus the results directly influenced the development of an instrument with which the various health care professions can control the treatment of spinal cord injuries in the future.

Who conducted and financed the study?

The studies were financed by Swiss Paraplegic Research in Nottwil, Switzerland. The survey took place in three of the Swiss centres for SCI, the Swiss paraplegic centre REHAB Basel, the Swiss Paraplegic Centre in Nottwil and the Paraplegic Centre of the Balgrist University Hospital in Zurich.

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