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

BACKGROUND: Family caregivers assume substantial caregiving responsibilities for persons with chronic conditions, such as individuals with spinal cord injury, which leads to negative impacts on their lives. Respite care and other services are provided as a temporary relief and support for them. Design of appropriate respite care programs depends on identification of beneficiary subgroups for the different types of service. This study aimed to quantify the uptake of different respite and support services for family caregivers, the reasons for non-use, and to explore the respective predictors. METHODS: A cross-sectional survey of family caregivers of persons with spinal cord injury was conducted nationwide in Switzerland. The use of 11 different respite and support services during the previous 12 months was investigated, along with caregivers’ reasons for not using any respite. Classification trees were used to characterize the beneficiaries and reasons for not using respite. RESULTS: About a third of family caregivers used at least one type of respite or support service during the previous 12 months. Utilization of respite care was greater among those who employed professional home care (57% vs 24% of those without professional home care). Marked cantonal differences were also observed in utilization of respite care. The primary reason for not using respite services was “no demand” (80% of non-users of respite services), mainly among caregivers who were less emotionally affected by their caregiving tasks. CONCLUSIONS: Utilization of respite and support services depends more on place of residence and use of home care services than on functional status of the care recipient. Accordingly, programs should be tailored to the cultural context of their potential users. This is best achieved through coordination with local health care professionals who can identify needs, provide information, initiate referrals, and integrate the care into a larger support plan. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-021-06651-6.