Activity and participation long term after stroke

Abstract: Background and aim: As an increasing number of people are living and ageing with the consequences of stroke, the rehabilitation and support provided for this group needs to have a long-term perspective. Moreover, to prevent long-term activity limitations and participation restrictions after stroke, increased knowledge is needed regarding how engagement in different types of activities develops beyond the first years of recovery and adaptation. As such engagement is complex and multifaceted it needs to be studied from different perspectives and using well-defined methods of assessment.Thus, the overarching aim of this thesis was to contribute to an improved understanding of how activity and participation develops up to 15 years after stroke and of factors that may influence this process. Participants and methods: The first two sub-studies of the thesis are based on longitudinal follow-up data from a sample of 145 stroke survivors consecutively included in the Lund Stroke Register during a one-year period and followed up after ten years with high retention rate. The second and third study builds on qualitative data from a sub-sample of the original participants, consisting of ten stroke survivors and four of their familiy members, all interviewed 15 years after stroke. Methods include an ICF-oriented conceptual analyzis of the Barthel Index (BI) and the modified Frenchay Activities Index (mFAI), and descriptive analysis of activity performance ten years after stroke as assesd by these two instruments. In addition, long-term predictors of the frequency of performing social and lesiure activities ten years after stroke were identified through multiple regression analysis using follow-up data from 16 months after the stroke. Finally, the subjective experiences of social and lesiure participation long-term after stroke were explored using a grounded theory approch, focusing on personal and environmental conditions and individual strategies. Main results and conclusions: The results show that the BI and the mFAI together cover 69 % of the ‘activities and participation’ component of the ICF core set for stroke and largely focus on different types of activities. Although most of the ten-year survivors were independent in self-care and basic mobility, performance of other types of activies varied substantially. In total, 23 % were rated as inactive, whereas the majority reported a high or moderate activity level ten years after stroke. The regression analyses resulted in a total of five significant predictors. A wide social network, ability to walk a few hundred meters, and driving a car at 16 months after the stroke was related to a higher frequency of social and leisure activities after ten years, whereas an age >75 years was related to a lower activity. The qualitative findings revealed that personal characteristics, access to activities, social networks, motivation, and perceived capacity are central to engagement in social and leisure activities after stroke. Furthermore, the strategies used to engage in such activities are based on individual goals and contexts, and result from balancing different priorities in life and evaluating costs and rewards of engagement. In conclusion, rehabilitation and support can be needed at different stages after stroke to meet the changing needs of long-term stroke survivors, and should focus on supporting stroke survivors and their families to understand and handle the long-term consequences of stroke in all areas of life, including social and leisure domains.