Stroke can lead to long-lasting physical problems such as mobility limitations,1cognitive problems such as attention or memory deficits,2 and emotional problems such as anxiety,3,4 depressive symptoms,3–5 and fatigue.4,6 The population of persons surviving a stroke7,8 increases, consistent with major improvements in acute stroke care (eg, stroke units, thrombolysis, and thrombectomy9,10), but this also means that more people have to deal with the long-lasting consequences of stroke.11,12 These consequences contribute to the deterioration of social participation post-stroke.13–17 Importantly, persons with stroke view social participation (participation hereafter) as a central aspect of their recovery.18,19
Participation can be defined as involvement in a life situation such as paid work, family, or community life,17 which consists of actual performed activities,20 such as the frequency of observable actions and behaviors,21–23 and the subjective experience of persons,20 such as experienced restrictions and satisfaction.21–23
In previous studies, it was observed that the frequency of activities decreases in persons with stroke, relative to their premorbid levels.16,24–28 This particularly applies to vocational activities (work, unpaid work, and household activities), but social activities decrease after stroke, too.28 Four months after discharge from outpatient rehabilitation, 50% of persons with stroke still experienced participation problems.29Social activity levels have been reported to be lower in persons with stroke at 1 year post-stroke than in healthy controls,30 a level that remained stable up to 3 years.31Past studies showed that only 39% of persons with stroke were satisfied with their lives as a whole after 1 year,16 which might be even lower up to 3 years post-stroke,32 especially in socially inactive persons.33
Although studies have shed some light on the course of participation over time post-stroke, it is difficult to get a good understanding of how levels of participation develop and change over time. This is a result of the use of cross-sectional designs,16,24,26,27,33 longitudinal designs limited to either only the first 6 months13,25,28,29 or only the long-term levels of participation after stroke,31,32,34studies only incorporating 2 time points,35 and many different participation measures, some measuring the frequency of activities and others the subjective experience of participation.36
Research into factors associated with participation post-stroke could lead to identifying possible risk factors of an unfavorable outcome. Earlier studies showed that demographic factors such as older age at stroke onset,14,37 lower levels of education,29,38 and female sex37 were related to a less favorable outcome in terms of participation, along with stroke-related factors such as dependence in activities of daily living (ADL),39,40 more severe stroke,37 and lower levels of cognitive functioning.26,29 However, these factors are yet to be examined in relation to the course of participation over time and as such to be identified as possible risk factors.
To get a more detailed and comprehensive understanding of participation over time, it is necessary to include repeated measurements of objective (ie, frequency of activities) as well as subjective (ie, experienced restrictions and satisfaction) aspects of participation. Furthermore, it is important to identify persons in the early stage after stroke, who are at risk of an unfavorable outcome in the long term. At this point in time, potential risk factors can be easily determined through available information, including demographics and stroke-related information, and rehabilitation care can be provided. Consequently, we studied participation over a 2-year follow-up in a clinical cohort of persons with stroke in order to answer the following research questions: how does participation develop over the first 2 years after stroke in terms of frequency, restrictions, and satisfaction? Moreover, which demographic and stroke-related factors are associated with this time course?[…]