Variability in Stroke Journeys: A Qualitative Study of Experiences of Persons With Stroke

ABSTRACT Background Stroke recovery is highly individual and often involves multiple transitions across healthcare settings. While standardised stroke pathways aim to improve quality of care, less is known about how persons with stroke experience person‐centred practice throughout their stroke journeys. Aim To explore how persons with stroke experience person‐centred practice throughout their stroke journeys. Methods A qualitative study was conducted with persons who had experienced stroke in Norway. Data were collected through twelve semi‐structured interviews and one written response. Reflexive thematic analysis, narrative construction and patient journey mapping were used to explore their experiences across the first 3 months post‐stroke onset. Results Participants' stroke journeys varied considerably in symptom presentation, needs and care experiences. Journey mapping visualised the differences in stroke journeys, healthcare interactions and experiences. Four themes were identified from the cross‐interview analysis: (1) Professional competence and relational care, (2) When the stroke pathway ends, the person's journey continues, (3) Standardised care versus individualised needs and (4) Participation across the journey. Experiences were generally positive in the hyperacute and acute phases and more variable following discharge, with participants describing limited follow‐up and access to rehabilitation, as well as unmet holistic needs. Conclusions Persons with stroke experiences varied considerably throughout their stroke journeys, with discharge to home regarded as a stressful, insufficiently supported phase of care. Supporting continuity and individualised approaches to care should better meet the diverse needs of persons with stroke. Patient and Public Contribution A user group consisting of persons with stroke and informal caregivers was recruited through a Norwegian stroke survivors association to be involved throughout the study. The user group consisted of seven persons, four females and three males, with ages ranging from their 40s to their 80s. The group included persons with stroke, persons with severe stroke, a person with aphasia, informal caregivers and the leader of the stroke association, who is also an informal caregiver. Two meetings, text communications and individual informal conversations took place with the user group to present and discuss the study design and obtain feedback on the interview content, format and procedures. The user group also supported participant recruitment. These participants took part in the interviews that form the basis of this study. Informal caregiver interviews were conducted in parallel as part of a related study. Preliminary findings were presented at the stroke survivors association's conference, and feedback was obtained.