A taxonomy of the economic costs of family care to adults

A systematic scoping review was conducted to evaluate the current state of knowledge of the economic costs incurred by family caregivers to adults with long-term health problems or disabilities. A narrative synthesis of 126 articles published since 1999 was undertaken to develop a taxonomy of the economic costs experienced by these caregivers. Three broad domains of sources of economic costs for caregivers were identified: employment consequences, out-of-pocket expenses and caregiving labor, with sub-categories within each domain. Economic outcomes were identified for each cost domain. Generation of new knowledge across the three cost domains has been uneven, with disproportionate interest in employment consequences. There are knowledge and methods gaps around all of the domains of care arising from failure to measure, or measure consistently, the costs; failure to account for contexts within which care is delivered; and lack of consistency in specifying care thresholds influencing labor force exit and employment consequences. An expanded research agenda on costs of family care should address cumulative and cross-domain care costs. Links between economic and social and health costs are fertile ground for a comprehensive understanding of the full costs of family care.