Exploring the stroke care journey from acute onset to discharge preparation: a longitudinal qualitative study

Stroke survivors and their caregivers often experience substantial challenges across the journey from symptom onset to discharge preparation. Understanding their evolving needs and care experiences may help improve patient-centered support and care across different stages of the stroke journey. This study aimed to explore the experiences and needs of patients with stroke and their caregivers across this in-hospital care journey. A longitudinal qualitative descriptive study was conducted using semi-structured interviews with hospitalized stroke patients and their primary family caregivers. Each patient-caregiver dyad was interviewed jointly at two time points during hospitalization: the acute phase (within 48 h of admission) and the discharge preparation phase (within 24 h before discharge). All interviews were audio-recorded, transcribed verbatim, and analyzed using conventional content analysis; the categories were subsequently organized within a patient journey framework. Fourteen patient–caregiver dyads were included. Conventional content analysis identified 28 subcategories, which were organized into a patient journey map from symptom onset to discharge preparation. The map captured stage-specific needs, pain points, and emotional experiences, showing a shift from urgent diagnosis and treatment concerns to recovery, rehabilitation, and discharge-related support needs. The needs, pain points, and emotional experiences of patients with stroke and their caregivers evolved across different stages of the stroke care journey. Continuous, stage-specific, and patient-centered support may help address unmet needs and improve care experiences during transitions from acute treatment to recovery and discharge.