Stroke Care Trajectory from Acute Care to Home: Implications for Caregivers

Introduction: Stroke occurs suddenly, often causing significant impairment for stroke survivors and requiring long-term assistance by family caregivers who are unprepared for its aftermath. Family caregiving is often overwhelming, difficult work. Research shows that caregivers experience poorer health and higher mortality rates than non-caregivers. Methods: In this grounded theory study, 19 persons with stroke and 18 family caregivers were interviewed during inpatient rehabilitation and within 6 months post-discharge. Interview questions focused on understanding how patients and family members managed the transition from inpatient rehabilitation to home. Interviews were coded and analyzed using dimensional analysis. Findings: Family caregivers found themselves moving through the stroke care trajectory without adequate time to process what would be required of them when their family member with stroke was discharged home. Transitions home were times of high stress, sleep deprivation, exhaustion, and confusion. Family members felt overwhelmed, abandoned, and ill-prepared to provide needed care. Community-based support resources were very limited or non-existent. Skills learned during inpatient rehabilitation often did not translate well in home settings resulting in increased risks for injury for both patients and caregivers. Conclusion: Stroke survivors and family caregivers are extremely vulnerable as they transition home from inpatient rehabilitation; resulting in poorer health, depression, and increased risk for injury. A better understanding of the needs of caregivers while their family members with stroke are receiving inpatient rehabilitation is needed. Moreover, new models of coordinated transitional care across settings are critical to meet post-discharge needs and improve outcomes for stroke survivors and family caregivers.