Excruciating Care: Experiences of Care Transition from Hospital to Home among the Family Caregivers of Patients with Spinal Cord Injury
- 1 January 2021
- journal article
- research article
- Published by Medknow in Nursing and Midwifery Studies
- Vol. 10 (1), 34-40
- https://doi.org/10.4103/nms.nms_102_19
Abstract
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.Keywords
This publication has 22 references indexed in Scilit:
- The Essential Role of the Rehabilitation Nurse in Facilitating Care Transitions: A White Paper by the Association of Rehabilitation NursesRehabilitation Nursing Journal, 2014
- Traumatic Brain Injury: Unmet Support Needs of Caregivers and Families in FloridaPLOS ONE, 2013
- Safety threats and opportunities to improve interfacility care transitions: insights from patients and family membersPatient Preference and Adherence, 2012
- Barriers for individuals with spinal cord injury returning to the community: A preliminary classificationDisability and Health Journal, 2012
- Becoming a caregiver: new family carers’ experience during the transition from hospital to homeJournal of Clinical Nursing, 2012
- Patient experiences of transitioning from hospital to home: An ethnographic quality improvement projectJournal of Hospital Medicine, 2012
- The Crisis of Stroke: Experiences of Patients and Their Family CaregiversTopics in Stroke Rehabilitation, 2011
- Difficulties adjusting to post-discharge life following a spinal cord injury: An interpretative phenomenological analysisPsychology, Health & Medicine, 2011
- Experience of Iranian persons receiving hemodialysis: A descriptive, exploratory studyNursing & Health Sciences, 2011
- Psychological impact and the burden of caregiving for persons with spinal cord injury (SCI) living in the community in FijiSpinal Cord, 2011