Participation after stroke in a short- and long-term perspective

Abstract: The main scope of this thesis was to study and describe perceived participation among persons with stroke. In doing so, different timepoints were chosen to make a more complete picture of participation after stroke. The two first studies were performed using quantitative methods. The results of study I demonstrated that emotional health, communication skills, and the ability to remember were perceived as quite good one month after stroke. The findings of study II showed that participation scores were widely distributed during the first year after stroke. Associations between perceived physical capacity and participation were found at 1, 6, and 12 months. Findings of study I and II indicate that physical functioning was important for perceived participation during all timepoints that were investigated in the first year after stroke. A continuous focus on physical functioning in rehabilitation should therefore also be beneficial for perceived participation. Study III and IV had qualitative designs and aimed to exemplify, describe and to deepen our understanding of how participation, and life in general, may be experienced in a long term perspective after stroke. Results of study III showed that participants most often emphasized work and social life when describing their participation. They had adapted to a somewhat altered way of living and the importance of consequences after stroke in everyday life had decreased. This result was partly confirmed by the results of study IV, which showed that participants had found new ways to approach difficult situations in everyday life. However, the more multi-dimensional result of study IV showed that several participants still felt depressed many years after onset, and were not content with how life had turned out at all. Findings of both qualitative studies showed a need for more knowledge about how participation can be promoted many years after stroke, so that more persons after stroke may achieve a positive identity and a life which they consider meaningful.