Armin Gemperli, Sara Rubinelli, Claudia Zanini, Jianan Huang, Mirjam Brach, Diana Pacheco Barzallo
Swiss Paraplegic Group, Health Services Research, Swiss Paraplegic Research, Nottwil, Switzerland. E-mail: armin.gemperli@paraplegie.ch
DOI: 10.2340/16501977-2762

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.

Family members are often the most important providers of care and assistance for persons with a spinal cord injury. Although they are a large population group, little is known about how family members cope with their duties as lay caregivers, or about their joys and sorrows. To find out about their living situation, a large, nationwide questionnaire survey was conducted in Switzerland. The results show that family caregivers are mostly females (72%), and have spent a mean of approxi-mately 13 years caring for their family member, for a mean of 21 h/week. Although family caregivers are very busy, they handle their caregiving duties and report coping well with the situation. They rarely use public respite services (i.e. short-term services organized to relieve family caregivers), in which they show little trust. In conclusion, given this situation, it is not advised to offer further respite provision, but rather to provide financial compensation to the caregivers for their efforts. This would demonstrate recognition for their work and stim-ulate the individual initiative of the caregivers.

Figure S1