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

• Published in: Physiotherapy theory and practice Vol. 40; no. 6; pp. 1265 - 1280
• Main Authors: Sivertsen, Marianne, De Jaegher, Hanne, Alstadhaug, Karl Bjørnar, Arntzen, Ellen Christin, Normann, Britt
• Format: Journal Article
• Language: English
• Published: England Taylor & Francis Ltd 02.06.2024; Taylor & Francis
• Subjects: Autonomy; Hospitalization; Inpatient care; Interdisciplinary aspects; Interviews; Participation; Patient admissions; Patient participation; Rehabilitation; Stroke; participation; autonomy; Stroke; rehabilitation; physiotherapy; action; enactive theory; relationship
• ISSN: 0959-3985; 1532-5040; 1532-5040
• DOI: 10.1080/09593985.2022.2140319

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. 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. 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. 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 in-patient rehabilitation rather than following direct discharge from hospital. 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.