Excruciating Care: Experiences of Care Transition from Hospital to Home among the Family Caregivers of Patients with Spinal Cord Injury

Background: Transition of patients with spinal cord injury (SCI) from hospital to home often involves a shift in caregiving responsibility from health-care providers to family caregivers. Poor care transition may lead to poor care-related outcomes. Objectives: The aim of this study was to explore experiences of care transition from hospital to home among the family caregivers of patients with SCI. Methods: This qualitative study was conducted in 2018-2019. Participants were 17 family caregivers of patients with SCI who were purposively recruited from two specialty SCI care centers in Iran. In-depth semi-structured interviews were held for data collection. Interviews were audio-recorded, transcribed, and analyzed using conventional content analysis. Results: The following four main categories were developed during data analysis: lack of knowledge (with two subcategories), excruciating care (with two subcategories), emotional burden of caregiving (with three subcategories), and need for support (with two subcategories). The nine subcategories of these main categories were lack of medical and care-related information, seeking for information, heavy burden of daily caregiving, need for providing professional care at home, feelings of sadness and sorrow, feeling of insufficiency, restriction of life, limited support by family members and relatives, and limited financial support by the government. Conclusion: Family caregivers of patients with SCI experience many challenges and problems during care transition from hospital to home, which can affect the quality of their care services for their patients. Therefore, they need ongoing support throughout the process of care