Abstract
Most Taiwanese patients with cancer prefer to die at home, but this preference is often unexpressed due to concern about burdening family caregivers (FCs). However, few studies have compared the caregiving burden of FCs while providing end-of-life care to a relative who eventually dies at home or hospital. This prospective, longitudinal study investigated differences in amount of assistance provided, subjective caregiving burden, depressive symptoms, and quality of life between FCs of Taiwanese patients with cancer who were terminally ill, then died at home and at a hospital. After the intake interview with 187 FCs, data were collected every 2 weeks until the patients died (M [SD] = 6.69 [4.92] times of interviews; range, 1 to 25; median, 5.0) and were analyzed by longitudinal logistic regression with a generalized estimating equation. Family caregivers whose relative died at home provided significantly more intensive assistance than their counterparts did, and caregiving more negatively impacted their finances. However, caregiving did not impact their health, daily schedule, perceived family support, or depressive symptoms to a greater negative extent. Instead, there is a trend for these caregivers to enjoy higher quality of life and to find more positive meaning in providing caregiving at home than do FCs whose relative died in hospital. In conclusion, supporting patients with cancer who are terminally ill and dying at home did not create a greater burden for Taiwanese FCs compared with those whose relatives are dying at a hospital.