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

Abstract

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. 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. 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. 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.

Caregiver Burden and Quality of Life Across Alzheimer’s Disease Severity Stages

“…That is, it can be difficult to disentangle common tasks from caregiving tasks, especially if the caregiver shares a household with the PwAD. 31 Furthermore, as providing informal care was a prerequisite for participating in the survey study, the study does not provide insights into the proportion of PwAD receiving informal care. Only panel members who completed the survey on a desktop or tablet were invited to complete the EQ-5D-5L instrument, which may limit the generalizability of the HRQoL findings.…”

“…Also, while a definition of informal care was provided in the survey, (candidate) respondents might view their activities differently. That is, it can be difficult to disentangle common tasks from caregiving tasks, especially if the caregiver shares a household with the PwAD 31. Furthermore, as providing informal care was a prerequisite for participating in the survey study, the study does not provide insights into the proportion of PwAD receiving informal care.…”

A Comparison of Methods for Identifying Informal Carers: Self-Declaration Versus a Time Diary

“…Conversely, self-declared methods may identify more non-married carers than activity-based methods. A literature review on the challenges of measuring informal care time highlighted the identification of informal carers as a key issue relevant for both monetary and non-monetary economic evaluation methods [ 36 ]. In particular, informal care monetary and non-monetary valuation methods should tailor the identification approach to the type of caregiving intended to be analysed.…”

The economic value of long‐term family caregiving. The situation of caregivers of persons with spinal cord injury in Switzerland

“…Nevertheless, how to address this issue is not yet clear in the literature. A possibility is to compare the reported hours of care of the caregiver with the reported hours of need of care by the person with SCI, and check the reasons for discrepancies (Urwin et al., 2021).…”