Longitudinal changes and predictors of caregiving burden while providing end-of-life care for terminally ill cancer patients

Background: The effect of caring for a dying cancer patient on caregiving burden has been explored primarily in Western-based studies with small samples or in studies that did not follow up until the patient's death, but has not yet been investigated in Taiwan. Objective: The study's goals were (1) to identify the trajectory of caregiving burden for family caregivers (FCs) of terminally ill cancer patients in Taiwan, and (2) to investigate the determinants of caregiving burden in a large sample and with longitudinal follow-ups, until the patient's death. Method: A prospective, longitudinal study was conducted among 193 FCs. The trajectory and determinants of caregiving burden were identified by a generalized estimation equation approach. Results: Caregiving burden did not change as the patient's death approached. FCs experienced heavy caregiving burden when their relative suffered from greater symptom distress or if they were spousal caregivers; provided high intensity of assistance to the patient while spending fewer hours providing care; reported financial insufficiency; or had lower social support, fewer psychological resources, or less confidence in caregiving. Conclusions: Taiwanese family caregivers' carrry moderate caregiving burden which did not change significantly as the patients' death approached. The effects of caregiving burden while providing EOL care to terminally ill cancer patients may be tempered substantially by enhancing family caregivers caregiving confidence, social support, and psychological resources.