The Challenges of Measuring Informal Care Time: A Review of the Literature

Background: Economic evaluations increasingly include the value of informal care, for example, in terms of caregiver health effects or time costs. If an economic evaluation uses caregiving time costs, appropriate measurement of caregiving time is an important first step prior to its valuation. There is no comprehensive overview of the measurement challenges for caregiving time. Methods: In this literature review, we searched Medline, Embase, Econlit and Scopus to identify measurement issues and associated studies which reported informal care time that addressed them. Results: The search identified 27 studies that addressed nine measurement issues. There is limited evidence on how to address these issues, although some have received relatively more attention, including incremental time (considered in 16 studies), time measurement method comparisons (six studies) and the inclusion of intangible tasks (four studies). Non-response (considered in only one study) and carer and recipient identification (two studies) were the most wide-reaching measurement concerns, as these determine who is identified as carers. There was no evidence on the consequences of these measurement challenges in terms of impacts on cost-effectiveness ratios and on the total cost of health conditions, which would be a crucial next step. Conclusions: Future research on these issues should consider a range of different settings, as informal care is highly heterogeneous. The measurement of informal care is key for its inclusion in economic evaluations but there is little consensus on how to appropriately measure this type of care.