Occupational engagement after stroke - a long-term perspective

Sammanfattning: Introduction: In the literature it is recognized that stroke can have lifelong consequences and that these consequences become evident in the occupations that constitute everyday life. With an increase in prevalence and in the number of stroke survivors returning to independent living there is a need to understand the challenges that may face stroke survivors, not just in a short perspective, but also in the chronic phase of stroke where new or different challenges may present in many areas of life. Exploring occupational engagement after stroke and how it evolves over time can provide important aspects on recovery and adaptation to build understanding of the type of, and timing of support and rehabilitation needed Aim: The overall aim of this thesis was to explore long-term performance and experiences of everyday life occupations for young and middle-aged stroke survivors and factors that may affect the ability to engage in occupation Methods: All four studies are based on subsamples of the Sahlgrenska Academy Study on Ischaemic Stroke. Study I (n 237) and II (n 296) included participants with stroke before the age of 70 and used a quantitative design aimed at exploring occupational performance by studying the frequency of performance in Instrumental Activities of Daily Living seven years post stroke. Further, factors that independently predict (study I- prospective data) or explain (study II- cross- sectional data) long-term occupational performance were identified by using multivariable logistic regression. Study III and IV (n 9) used qualitative data collected by interviewing participants who had stroke between the ages of 45 and 60 years. The interviews took place 15-18 years after stroke onset and the interview guide was designed to address occupational engagement over a long-time perspective. Data were analysed using thematic analysis and focused on how engagement changed over time and across contexts (study III) and how views on and experiences of work affect life after stroke (study IV). Results: The findings show reduced frequency of occupational performance, especially within more complex leisure and work activities. The lowest frequency was found for work where over 50% of those of working age at the seven-year follow-up reported not working. Regression analyses show that reduced frequency was related to gender, cohabitation status, global functional independence, stroke severity, cognitive dysfunction, emotional problems, and fatigue. Qualitative findings revealed that with time consequences of stroke were integrated into everyday life and participants described how they had moved on. Throughout this long process, occupational engagement was key for understanding, accepting and adapting to consequences of stroke. Work in particular was described as a central occupation affecting everyday life. Maintaining or replacing work with new occupations was challenging. The facilitators and barriers in the process surrounding return to work and at the workplace identified indicate a need for individual support. Conclusion: The changes in occupational performance and experiences after stroke found in these studies indicate a need for long-term support and rehabilitation. Attention should be paid to supporting stroke survivors to engage in occupations that enable them to find ways of adapting to consequences that are in accordance with individual goals and context. For younger stroke survivors’ particular attention should be paid to work and encompass a broader perspective than just initial return.