Functioning and disability in spinal cord injury from the consumer perspective: an international qualitative study using focus groups and the ICF

Study design: Qualitative, multi-center study. Objectives: To examine the lived experiences of persons with spinal cord injury (SCI) in both the early post-acute and the long-term context using the International Classification of Functioning, Disability and Health (ICF) as a frame of reference. Setting: International study sites representing the six World Health Organization world regions. Methods: A qualitative study using focus groups methodology was conducted. Sample size was determined by saturation. The focus groups were digitally recorded and transcribed verbatim. The meaning condensation procedure was used for the data analysis. The resulting meaningful concepts were linked to ICF categories according to established linking rules. Results: Forty-nine focus groups with 230 participants were performed. Saturation was reached in four out of the six world regions. A total of 3122 and 4423 relevant concepts were identified in the focus groups for the early post-acute and the long-term context, respectively, and linked to a total of 171 and 188 second-level categories. All chapters of the ICF components Body functions, Activities and participation and Environmental factors were represented by the linked ICF categories. In all, 36 and 113 concepts, respectively, are not classified by the ICF and 306 and 444, respectively, could be assigned to the ICF component Personal Factors, which is not yet classified. Conclusion: A broad range of the individual experiences of persons with SCI is covered by the ICF. A large number of experiences were related to Personal Factors. Spinal Cord (2010) 48, 603-613; doi:10.1038/sc.2009.184; published online 12 January 2010