Trajectory and determinants of the quality of life of family caregivers of terminally ill cancer patients in Taiwan

Background Family caregiving is common and important in Taiwanese culture. However, the combination of anticipated loss, prolonged psychological distress, and the physical demands of caregiving can seriously compromise the quality of life (QOL) of a family caregiver (FC). The effect of caring for a dying cancer patient on a FC's QOL has been explored in western countries-primarily with small sample sizes or short-term follow-ups-but has not yet been investigated in Taiwan. Therefore, the purposes of this study were to: (1) identify the trajectory of the QOL of FCs of terminally ill cancer patients in Taiwan; and (2) investigate the determinants of the QOL of FCs, in a large sample and with longer follow-ups, until the patient dies. Methods A prospective, longitudinal study was conducted among 167 FCs. Trajectory and determinants of FCs' QOL were identified by a generalized estimation equation (GEE). Results Caregiving for a terminally ill cancer patient extracts a toll from a FC's QOL and causes it to deteriorate significantly over time. The results from the multivariate GEE analysis indicated that this deterioration of a FC's QOL reflects the patient's increasing distress from symptoms, the gradual loss of confidence in caregiving and an increased subjective caregiving burden on the FC as the patient's death approaches, and a weaker psychological resource (i.e., sense of coherence) of the FC. Conclusion Taiwanese FCs' QOL deteriorated significantly as the patient's death approached. This study contributes to the family caregiving literature by using longitudinal data to confirm that the available psychological resource of a FC and the 'appraisals of caregiving' are more salient in determining a FC's QOL than the patient's/FC's characteristics and the caregiving demands.