Engagement of Primary Stakeholders to Tailor a Comprehensive Transitional Care Model for Persons Who Have Experienced a Stroke and Their Caregivers

Abstract

Background: Stroke is the leading cause of disability in the US, affecting approximately 795,000 persons annually. Stroke care is delivered across multiple settings from hyperacute care in a hospital through chronic stroke management in the community. Considerable advancements have been made in the delivery of hyperacute and acute stroke care. Science and practice gaps exist in providing stroke transitional care across multiple providers and settings once an individual is discharged from an in-patient care facility to home. Purpose: Using a qualitative descriptive design, this study engaged and elicited descriptions from stroke survivors and caregivers affected by stroke to inform the refinement and tailoring of a stroke-specific model of transitional care. Sample: A purposeful sample of 19 individuals affected by stroke and their caregivers was required to attain data saturation. Participants provided rich descriptions regarding the postacute stroke transition from an inpatient care facility to home. Methods: The investigator conducted five focus group discussions using a semi-structured interview format to elicit participant descriptions of their stroke transitional care experience. Interviews were audio-recorded, transcribed, organized using Atlas.ti 8.1 software, and analyzed using the content analysis method. Findings: Stroke transitional care is generally not provided, and a host of unmet survivor and caregiver needs persist. The findings of this study inform stroke-specific exemplars for essential transitional care components. Stroke-specific findings emerged from the data that could not be explained in the context of the transitional care model, such as self-determination and self-efficacy, transportation challenges, and neuropsychiatric management. There is considerable healthcare system passivity in delivering postacute and transitional stroke care, leaving stroke survivors and their caregivers feeling abandoned and marginalized. The findings from this dissertation study and the literature inform refined, stroke-specific components and a stroke transitional care model. Conclusion: This dissertation study is the first of its kind to engage primary stakeholders in developing stroke-specific refinements to and exemplars of stroke transitional care components. Study findings describe an urgent need for active stroke transitional care delivery, discusses stroke-specific exemplars of core transitional care components, and identifies refinements for a stroke transitional care model. The findings of this study are innovative in describing a community stroke nurse-led transitional care model that “reaches back” to the hospital. The unique findings from this study can inform a community-centric, stroke-specific transitional care model that aligns with the American Heart Association/American Stroke Association’s guidelines for adult stroke rehabilitation and recovery, from which community stroke nurse-led interventions can be developed and examined.