Abstract
BackgroundFamily 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.MethodsA 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.ResultsAbout 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.ConclusionsUtilization 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.
Highlights
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
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
Between August 2016 and July 2017, the persons with spinal cord injury (SCI) were contacted and asked to forward a questionnaire to their primary family caregiver. Their contact information was acquired from the Swiss Spinal Cord Injury Cohort Study (SwiSCI) database [18], which represents one of the largest community database in the context of SCI [19]
Summary
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. Design of appropriate respite care programs depends on identification of beneficiary subgroups for the different types of service. Informal care can have positive effects on the well-being of care recipients, such as individuals with spinal cord injury (SCI) It is care provided outside the context of formal employment regulations [1], in which family caregivers are mostly involved. They assume substantial responsibilities, such as nursing, emotional, and practical support [2, 3], which can have negative impacts on their lives [4]. To design appropriate respite care programs, it is necessary to identify beneficiary subgroups for different types of services [6, 7]
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