There is a lack of consensus in how informal caregivers are defined in national surveys (Kent et al., 2016). Definitions range from restrictive to broad, and influence who is included in basic and translational caregiving research. More restrictive definitions limit caregiver inclusion criteria to those who meet thresholds related to hours of care provided and/or assistance with daily care tasks. For example, some studies require a minimum amount of care to be provided by a family member (e.g., 4 hours per day or help with at least one activity of daily living or ADL). Other studies restrict participation to those who are the “primary” caregiver. Broader definitions simply require some level of impairment on the part of the care-recipient (e.g. having two impairments in instrumental activities of daily living or IADLs).
Using a lower threshold for defining a person as a “caregiver” can be beneficial for recruiting a larger sample, but some of the individuals identified may actually be doing little or no “hands-on” caregiving (particularly with respect to ADLs).
This can be an important issue because studies that include caregivers who have minimal caregiving responsibilities may show less impact of family caregiving.
Further, there may be discrepancies between subjective and objective reports of caregiving status. Some people report providing instrumental, tangible, and emotional help to another person but do not identify with the term “caregiver”. Others identify with the term “caregiver” but report not providing these types of assistance. Therefore, to most accurately identify caregivers, it may be beneficial to measure caregiving status objectively (e.g., “During the last 12 months have you, yourself, given personal care for a period of one month or more to a family member or friend because of a physical or medical condition, illness or disability?’’) and subjectively (e.g., “Are you currently or have you been in the last year a caregiver for a family member or friend?”).
Reference
Kent, E. E., Rowland, J. H., Northouse, L., Litzelman, K., Chou, W. Y. S., Shelburne, N., ...Huss, K. (2016). Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving. Cancer, 122(13), 1987-1995. doi:10.1002/cncr.29939