The Crisis of Stroke: Experiences of Patients and Their Family Caregivers

Abstract

Purpose Approximately 4.8 million stroke survivors are living in the community with some level of disability requiring the assistance of family caregivers. Stroke family caregivers are often unprepared for the demands required of them. The purpose of this grounded theory study was to explore the needs of stroke patients and their family caregivers as they transitioned through the stroke care continuum from acute care to inpatient rehabilitation to home. Methods Thirty-eight participants, 19 recovering stroke patients (11 male, 8 female), 15 primary family caregivers (14 spouses, 1 mother), and 4 adult children were interviewed during their stay at a rehabilitation facility and within 6 months of discharge. Interview questions were loosely structured and focused on the stroke experience and how patients and caregivers were managing postdischarge. Data were analyzed using dimensional and comparative analysis. Results Findings were organized in a conceptual framework illustrating the trajectory of the crisis of stroke. Stroke survivors and their caregivers faced enormous challenges as they moved through 3 phases of the trajectory: the stroke crisis, expectations for recovery, and the crisis of discharge. Findings from this study suggest that as caregivers move through the phases of the trajectory, they do not have a good understanding of the role to which they are committing, and they are often underprepared to take on even the basic tasks to meet the patients’ needs on discharge. Conclusion Stroke survivors and their caregivers do not have adequate time to deal with the shock and crisis of the stroke event, let alone the crisis of discharge and all of the new responsibilities with which they must deal.

Psychometric properties of the Caregiver Preparedness Scale in caregivers of stroke survivors

“…17,18 Stroke survivors are generally discharged home in a short period of time and require assistance in performing ADL, even after rehabilitation. 19 Caregivers of stroke survivors play a pivotal role in assisting in the physical, cognitive and emotional needs of stroke survivors 20 ; however, they often feel unprepared for their new caregiver role. 21,22 These issues can cause increased errors in care, duplication of services, and inappropriate or absent treatment for stroke survivors, and even increased risk for patients' readmission to hospital.…”

Financial burden of stroke on family and caregiver in India: a literature review

“…Men are more likely to have a stroke than women: the male/female sex ratio for India is 7:1. 17 Stroke can occur at any of age. Childhood disability entails economic costs that ate to some extent measurable.…”

The everyday life of adult family members of working aged survivors of stroke during the first year after the stroke – an integrative review

“…Stroke patients and all family members were faced with enormous challenges when they moved forward through three phases: the crisis caused by stroke, expectations of rehabilitation of the patient and the crisis caused by discharge to home [31] . Family members were sure that their actions helped the sick person to rehabilitate, but they expressed that they also needed emotional and concrete support from others [25] .…”

“…The other family members were a support network. The changes in the stroke patient`s personality sometimes made the family member feel like an outsider in the situation [23][24][25][30][31][32][33][34] . Family members related that during the course of stroke it was very difficult to care for their loved one.…”