Beyond the Clinic: How Stroke Survivors Navigate Secondary Prevention Through Situated Agency.

Abstract

Background: Secondary stroke prevention is critical to reduce recurrent strokes; however, stroke survivors' real-world engagement with secondary preventive care remains poorly characterized.

Methods: We conducted a qualitative study to understand the barriers and facilitators faced by stroke survivors in the Greater Toronto Area, Canada. Adult stroke survivors with low or moderate disability, who had a first-ever stroke in the year prior, were recruited from five stroke prevention clinics. Semi-structured interviews were conducted in three different languages. Recordings were transcribed, and the transcripts were coded and analyzed using interpretive descriptive methodology. We compared experiences by immigration status during coding; overlapping patterns led us to present integrated themes and note where intensity differed.

Results: Twenty-five stroke survivors (40% women, mean age 70.3 years) were interviewed. We demonstrate how actions typically framed as patient behaviour were shaped by, and in turn shaped, broader structural and relational conditions, which we interpret through the lens of situated agency. We identified seven core themes: (1) Self-reliance as a default mode of recovery; (2) Gaps in understanding of stroke risk and prevention; (3) Barriers to engaging in preventive health behaviours; (4) Intersectional vulnerability in system navigation; (5) Family and social networks: source of strength or silent gaps; (6) Structural assumptions about self-management; (7) Desire for dignity and agency.

Discussion: Stroke survivors' engagement with stroke preventive care is shaped by external circumstances and the ways they act within and respond to their contexts. Using a situated agency framework to design interventions could improve engagement and reduce stroke recurrence.