The precarity of patient participation - a qualitative interview study of experiences from the acute stroke and rehabilitation journey

Abstract

Introduction: Active patient participation is an important factor in optimizing post-stroke recovery, yet it is often low, regardless of stroke severity. The reasons behind this trend are unclear.<p> <p>Purpose: To explore how people who have suffered a stroke, perceive the transition from independence to dependence and whether their role in post-stroke rehabilitation influences active participation <p>Methods: In-depth interviews with 17 people who have had a stroke. Data were analyzed using systematic text condensation informed by the concept of autonomy from enactive theory. <p>Results: Two categories emerged. The first captures how the stroke and the resultant hospital admission produces a shift from being an autonomous subject to “an object on an assembly line.” Protocol-based investigations, inactivity, and a lack of patient involvement predominantly determine the hospital context. The second category illuminates how people who have survived a stroke passively adapt to the hospital system, a behavior that stands in contrast to the participatory enablement facilitated by community. Patients feel more prepared for the transition home after inpatient rehabilitation rather than following direct discharge from hospital. <p>Conclusion: Bodily changes, the traditional patient role, and the hospital context collectively exacerbate a reduction of individual autonomy. Thus, an interactive partnership between people who survived a stroke and multidisciplinary professionals may strengthen autonomy and promote participation after a stroke.