The experience of stroke survivors and caregivers during hospital-to-home transitional care: A qualitative longitudinal study

Abstract

Background: Stroke survivors and their caregivers experience different difficulties that arise from certain physical, psychological, social aspects and caring burdens during the hospital-to-home transitional period. Although there are abundant studies that focus on stroke transitional care, there are limited qualitative studies that synthesize the experience of hospital-to-home transitional care for stroke survivors and their caregivers in China.

Objective: To evaluate the experience of stroke survivors and their family caregivers during hospital-to-home transitional care in China.

Methods: A qualitative longitudinal study based on semi-structured interviews were implemented to address the research objective. Interviews were conducted at two stages, (1) when stroke survivors were close to discharge, and (2) within two months post-discharge. Participants were recruited from one tertiary hospital between April and September 2019. Data were analyzed using reflexive thematic analysis.

Findings: Twenty-three stroke survivor/caregiver dyads participated, totaling 92 individual interviews. The thematic framework based on the experience of stroke survivors and caregivers reveals a three-phases of the hospital-to-home trajectory: survived, living in the mist, and crisis at home. The study identified one key theme (the optimism and hope) in the first phase, four key themes in the second (the pre-discharge emotional concerns and reactions, lack of stroke knowledge and stroke care information, difficulties of performing home-based healthcare, expectation of hospital pre-discharge) and in the third phase (high level of post-discharge stress, inaccessible postdischarge care services and health resources, interpersonal relationship disruption and lifestyle changes, financial burdens) respectively. In addition, several interconnected subthemes for stroke survivors' and caregivers' experiences were identified in each phase.

Conclusion: The experience of stroke survivors and caregivers during hospital-to-home transitional care is a dynamic process with enormous challenges in each phase. These findings have implications for policymakers and health care systems regarding developing an enabling environment that supports successful hospital-to-home transitional care. Collaboration with health care professionals, accessible rehabilitation services and follow-up support after discharge, and available community and social support are warranted to be integrated into transitional care to help stroke survivors and caregivers to facilitate their hospital-to-home trajectory.

Keywords: Experience; Family caregiver; Hospital-to-home; Qualitative research; Stroke; Stroke survivor; Transitional care.