Measurement challenges of informal caregiving: A novel measurement method applied to a cohort of palliative care patients

Abstract

Informal caregiving is a complex concept, and inconsistencies are found in the literature regarding how to measure it. The differences in tasks included in the definition of caregiving, as well as the different methods used to measure caregiving time may explain the huge variations in results found in the literature. The current paper aimed to lay out the challenges of how to calculate the time spent by informal caregivers on providing care and assistance to an ill person at home. It also proposes a method for measuring informal caregiving time, which attempts to distinguish between "normal" activities and "caregiving" activities. The proposed measurement method is then applied to a cohort of informal caregivers of palliative care patients. The illustration study revealed that this method brought advantages comparatively to other methods, and that persisting challenges remain in measuring informal caregiving time. We conclude that, the estimate of time spent caregiving for palliative care patients may be useful in guiding support programs for the families taking care of a loved one at home during the palliative phase of care.