The Lived Experience of Caregivers in the Older Stroke Survivors' Care Pathway during the Transitional Home Program-A Qualitative Study

Abstract

Background: stroke is a major cause of disability and death, globally. Many stroke survivors live with disabilities, requiring significant caregiving support. Caregivers often feel unprepared and burdened, experiencing isolation and health declines. Their well-being and involvement in discharge planning impact post-discharge care quality.

Purpose: to investigate the experiences of caregivers of older stroke survivors regarding their expectations in the care pathway during the transitional home program, as this phenomenon is currently understudied in the present context.

Methods: by employing a qualitative design, this study utilized a phenomenological approach developed by Cohen. Eighteen caregivers of stroke survivors participated.

Findings: four main themes emerged from the analysis: (1) the sense of loss experienced by stroke survivors and perceived by caregivers; (2) the importance of social support in the recovery and well-being of both stroke survivors and caregivers; (3) the increased workload of caregivers; and (4) the lack of awareness of the needs during the transition, leading to resignation when facing complications.

Conclusion: the findings highlight the significant impact of stroke on caregivers, affecting both the individual characteristics and social relationships of stroke survivors and their caregivers. There is a need for a nuanced understanding of caregivers' roles and responsibilities.

Keywords: caregiver; qualitative research; stroke; transitional care.