The work of spousal caregiving of older adults with end-stage heart failure

Heart failure requires complex home management, which is typically performed by a spouse. Yet little is known about the actual "work" of caregiving in individuals with heart failure. The purpose of this study was to describe the types of work manifested in long-term spousal caregiving for older adults across the progression of heart failure. Secondary qualitative analysis was performed of the in-depth serial interview data of 20 spousal caregivers of individuals with heart failure age 62 and older, collected monthly over 12 to 14 months. The work of spousal caregiving impacted all aspects of the lives of spouses and was constant over time and across the course of heart failure. The work of caregiving was always present, even during times of medical stability, but the type of work and intensity varied throughout the course of the illness. Caregivers should be assessed for unmet needs throughout the course of heart failure, not just during the individuals' exacerbations or hospitalizations.