Abstract

Background: Caregiver burden (CB) is a consequence of providing care to people with spinal cord injury (SCI). However, there is a lack of clarity about the influence of secondary conditions of care recipients on family caregivers. Secondary conditions refer to the physical and psychological complications that can occur after SCI and lead to increased hospitalization and reduced functionality, quality of life, and social participation. Objective: To assess the impact of physical and psychological secondary conditions of people with SCI on the perceived burden of family caregivers. Methods: A multicenter, cross-sectional study of 56 dyads of family caregivers and individuals with SCI in two urban spinal units in Italy and Ireland. Care recipients completed a toolset consisting of demographic information and assessments of functional, physical, and psychological health. Caregivers completed a multidimensional measure of CB. Bivariate data analysis was used. Results: No significant differences between centers were identified. CB was found to be related to physical secondary conditions and functional independence but not to mental health of care recipients. Bladder dysfunction and urinary tract infections influenced all dimensions of CB, whereas pressure injuries influenced only the time-dependent dimension. Level and completeness of injury and duration of caregiving increased CB. Conclusion: Findings indicate the value of a reduction in secondary conditions not just for individuals with SCI but also for their family caregivers. To reduce the individual and family burden of secondary conditions, a two-pronged, multidimensional approach, focusing on self-management for care recipients and psychoeducational support for caregivers, is required.

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