Objective: To describe the living situation of family caregivers of persons with spinal cord injury.
Design: Cross-sectional questionnaire.
Subjects: Primary family caregivers of persons with chronic spinal cord injury in Switzerland.
Methods: Cross-sectional study of family caregivers of persons with spinal cord injury. For comparison, the study population was matched to family care-givers of persons dealing with long-term health conditions in the general population, using a propensity-score based algorithm.
Results: A total of 717 family caregivers participat-ed in the survey (35% response rate). Participants were mostly female (72%), mean age 57 years, and had spent approximately 13 years caring for their relative. A mean of 21 h/week was spent providing care and assistance. The vast majority of family care-givers reported coping well with their situation. However, support from public services was deemed inadequate. Compared with family caregivers in the general population, family caregivers of persons with spinal cord injury performed more caring tasks and reported a slightly lower quality of life.
Conclusion: Family caregivers of persons with spinal cord injury are self-reliant to cope with their situation, but report discontent with public support ser-vices. The healthcare system could provide alternative support measures, such as direct financial compensation.
Keywords: community medicine; family caregiver; home care service; home nursing; independent living; informal sector; nursing; spinal cord injury.