Caregivers’ burden of care during emergency department care transitions among older adults: a mixed methods cohort study

Abstract

AbstractObjectiveImproving care transitions for older adults can reduce emergency department (ED) revisits, and the strain placed upon caregivers. We analyzed whether caregivers felt a change in burden following a care transition, and what may be improved to reduce it.MethodsThis mixed-methods observational study nested within LEARNING WISDOM included caregivers of older patients who experienced an ED care transition. Burden was collected with the brief Zarit Burden Interview (ZBI-12), and caregivers commented on the care transition. A qualitative coding scheme of patient care transitions was created to reflect themes important to caregivers. Comments were randomly analyzed until saturation and themes were extracted from the data. We followed both the SRQR and STROBE checklists.ResultsComments from 581 caregivers (mean age (SD) 64.5 (12.3), 68% women) caring for patients (mean age (SD) 77.2 (7.54), 48% women) were analyzed. Caregivers overwhelmingly reported dissatisfaction and unmet service expectations, particularly with home care and domestic help. Communication and follow-up from the ED emerged as an area for improvement. Caregivers who reported an increased level of burden following a care recipient’s care transition had significantly higher ZBI scores than caregivers who self-reported stable burden levels, but not improved burden levels.ConclusionCaregivers with increasing, stable, and improved levels of subjective burden all reported areas for improvement in the care transition process. Themes centering on the capacity to live at home most frequently and may represent serious challenges to caregivers. Addressing these challenges could improve both caregiver burden and care transitions.Key pointsWe analyzed caregivers’ thoughts about emergency department care transitions using both qualitative and quantitative tools.Caregivers reported dissatisfaction and unmet service expectations with home care, domestic help, and coordinating follow-ups.Variance in self-reported subjective caregiver burden corresponds to Zarit Burden Interview (ZBI) scores.