Participation and integration from the perspective of persons with SCI from five European countries

Abstract

OBJECTIVE: To examine the subjective understanding of participation and integration of persons with spinal cord injuries from 5 European countries and to compare these findings with the International Classification of Functioning, Disability and Health (ICF)’s conceptualization of participation. METHODS: Semi-structured interviews with 54 persons with acquired spinal cord injuries and 3 with spina bifida from 5 countries were examined using qualitative content analysis. RESULTS: Integration was most often associated with social acceptance and, furthermore, with ordinary performance, equality and freedom of choice. Participation was most often described as ordinary performance, with less emphasis on social acceptance and equality. However, participation and integration overlapped in people’s narratives and were difficult to separate. The perception of participation and integration was largely similar across countries. In contrast to others, however, Finnish interviewees were more likely to associate participation with contributing to society. A variety of life domains was identified, of which recreation and leisure, work life, sports and going out were the most prevalent. CONCLUSION: While participation domains are well covered by the ICF, as is the notion of ordinary performance, interviewees also referred to a rights (e.g. acceptance) and duties (e.g. contribution) perspective.