Navigating the Stroke Rehabilitation System: A Family Caregiver's Perspective

Abstract

Introduction/ Objectives: Stroke, the third leading cause of death in Canada, is projected to rise in the next 20 years as the population ages and obesity rates increase. Family caregivers fulfill pertinent roles in providing support for family members who have survived a stroke, from onset to re-integration into the community. However, the transition from rehabilitation to home is a crucial transition for both the stroke survivor and family caregiver. As the stroke survivor transitions home from a rehabilitation facility, family caregivers provide different types of support, including assistance with navigating the stroke rehabilitation system. They also are a constant source of support for the stroke survivor providing them with continuity during the transition. In this exploratory study we examined family caregivers’ perceptions and experiences navigating the stroke rehabilitation system. The theories of continuity care and complex adaptive systems were used to examine the transition home from hospital or stroke rehabilitation facility, and in some cases back to hospital. Methodology: Family caregivers (n=14) who provide care for a stroke survivor were recruited 4-12 weeks following the patient’s discharge from a stroke rehabilitation facility. Interviews were conducted with family caregivers to examine their perceptions and experiences navigating the stroke rehabilitation system. Directed content analysis was used to explore the perceptions of family caregivers as they reflected on the transitions home. The theories of continuity of care and complex adaptive systems were used to interpret their experiences. Results/Conclusions: During the transition home from a rehabilitation facility, family caregivers are a constant source of support, providing the stroke survivor with continuity. Emergent themes highlight the importance of the caregiving role, and barriers and facilitators that impact the role, and influence continuity of care. Also, supports and services in the community were limited or did not meet the specific needs of the family caregiver. The acknowledgment of the unique attributes of each case will ensure supports and services are tailored to the family caregiver’s needs. Mitigation of systemic barriers would also decrease complexity experienced at the micro-level in the stroke rehabilitation system, and better support the family caregiver during the transition home from a stroke rehabilitation facility.