Who are the beneficiaries and what are the reasons for non-utilization of respite care? A cross-sectional study on family caregivers

BackgroundFamily caregivers assume substantial caregiving responsibilities for persons with chronic conditions, which leads to negative impact on their lives. Respite care is provided as a temporary relief for them. The design of appropriate respite care programs requires the identification of beneficiary subgroups for different types of services. The objectives of the study were to quantify the uptake of respite care services by family caregivers of persons with spinal cord injury, and to identify the main beneficiaries of the respective offers and the reasons for non-use.MethodsA cross-sectional survey of family caregivers of persons with spinal cord injury was conducted nationwide in Switzerland. The use of 11 different respite care services during the last 12 months was investigated, along with caregivers’ reasons for not using any respite service. Classification trees were used to characterize the beneficiaries and reasons for not using respite services.ResultsOne-third of family caregivers used at least one type of respite care service during the last 12 months. Utilization of respite care was found to be greater among those who employed professional home care (57% vs 24% among those without professional home care). There were marked cantonal differences in the utilization of respite care. The primary reason for not using respite services was “no demand” (80% among non-users of respite services), mainly among caregivers who were less emotionally affected by their caregiving tasks. Conclusions Utilization of respite care services primarily depends on living arrangements and place of residency and less on the functional status of the care recipient. Programs should thus be tailored to the cultural context of their potential users. This is best achieved through coordination with local health care professionals who can identify the needs, provide information, initiate referrals, and integrate the care into a larger support plan.