Patient-Spouse Experiences of Post-Stroke Life Reconstruction: A Longitudinal Dyadic Journey Mapping Study

Young and middle-aged stroke survivors with residual limb motor impairment continue rehabilitation while resuming employment, family responsibilities, and social roles. Their spouses often provide care and rehabilitation support, yet little is known about how partners' experiences compare and change within dyads over time. This study aimed to examine the experiences of young and middle-aged stroke survivors with limb motor impairment and their spouses across inpatient recovery, early transition home, and longer-term home-based life reconstruction, and to synthesize the findings into a patient-spouse dual-line journey map.

This longitudinal qualitative study recruited 18 patient-spouse dyads using maximum-variation purposive sampling. Patients and spouses were interviewed separately 1-3 days before discharge (T1), 4 weeks after discharge (T2), and 6 months after discharge (T3), yielding 108 interviews. Data were analyzed using the Framework Method adapted for longitudinal and dyadic qualitative data. Longitudinal matrices and within- and between-dyad comparisons informed the visual synthesis of findings.

Findings were synthesized across three phases: T1: Inpatient recovery and preparation for discharge; T2: Early transition home and emerging differences in independence and safety; and T3: Longer-term life reconstruction and varied dyadic adjustment. Five cross-cutting analytic domains informed this synthesis: patients' rehabilitation and everyday-life experiences; spouses' caregiving experiences; convergence and difference within dyads; emotional experiences; and stage-specific support needs and service gaps. At T1, professional guidance provided reassurance, while preparation for home remained incomplete. At T2, patients' attempts at independence coexisted with spouses' safety concerns and difficulties applying discharge guidance. At T3, negotiated goals and reassurance in some dyads contrasted with restricted participation, caregiving strain, or reduced communication in others. These findings informed a patient-spouse dual-line journey map.

Patients' rehabilitation and everyday-life experiences and spouses' caregiving experiences changed across the hospital-to-home transition, with differing priorities within dyads and varied longer-term adjustment. Findings support involving both partners in discharge preparation and providing individualized follow-up, rehabilitation, and caregiver support responsive to changing needs.