title: Perceived participation, experiences from persons with spinal cord injury in their transition period from hospital to home.
abstract: It is suggested that participation should be achieved at the end of the rehabilitation process. However, there is a lack of consensus on the definition, the conceptualization and the measurement of participation. This study aims to add to the existing body of knowledge of participation by exploring the 'person perceived participation' in individuals with spinal cord injury (SCI). On the basis of the 'grounded theory' approach, in-depth, semistructured interviews were conducted with 11 SCI patients from a rehabilitation cohort in their transition period from hospital to home, to gain an insider perspective on the concept of participation. Results identified three different categories of participation: social participation, occupational participation and socio occupational participation. The participants conceptualize participation as a set of values, including experiencing free choice to perform activities, performing according to the person's identity, experiencing personal growth, belonging by experiencing trust and security, feeling validated, having a sense of control, experiencing a sense of importance and finding equal identities. In conclusion, from a client perspective, participation is a complex,multidimensional construct and can be considered asa dyad between the individual's social interactions and his specific activities performed. Participation was not experienced by the SCI patients as an objective way of performing activities within a societal context or as frequencies of activities performed, but rather as an internal process of negotiation that seemed to be based on balancing personal and societal values.
authors.affiliation: Department of RehabilitationSciences and Physiotherapy, Ghent University, Ghent, Belgium. dominique.vandevelde@ugent.be
authors.forename: Dominique
authors.initials: D
authors.lastname: Van de Veldea
authors.forename: Piet
authors.initials: P
authors.lastname: Bracke
authors.forename: Geert
authors.initials: G
authors.lastname: Van Hove
authors.forename: Staffan
authors.initials: S
authors.lastname: Josephsson
authors.forename: Guy
authors.initials: G
authors.lastname: Vanderstraeten
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D002755:Choice Behavior; D004185:Disability Evaluation; D006801:Humans; D007389:Internal-External Control; D008297:Male; D008875:Middle Aged; D010351:Patient Discharge; D010358:Patient Participation; D012050:Rehabilitation, Vocational / Q000523:psychology; D012648:Self Care / Q000523:psychology; D012649:Self Concept; D012917:Social Adjustment; D012919:Social Behavior; D012933:Social Identification; D012945:Social Values; D013119:Spinal Cord Injuries / Q000523:psychology / Q000534:rehabilitation*