Factors associated with caregiver burden among caregivers of patients with cancer in a hospice setting

Abstract

Purpose: Previous research has examined caregiver burden in the context of chronic illness, but little is known about this problem in hospice settings. The objective of this project was to identify factors associated with caregiver perceptions of burden among those caring for the terminally ill, with a long-term goal of better understanding the links between the level of burden and the risk of adverse medical and psychological outcomes. Our expectation was that certain groups (e.g., older women) would experience greater burden. Methods: We conducted a cross-sectional survey of primary caregivers in a hospice setting. Among 388 caregivers of patients with cancer admitted between October 1999 and September 2000, 200 (52%) agreed to participate. In-person interviews were conducted to ascertain data on the caregivers' socio-demographic characteristics, self-reported health status, support systems, religiosity, and amount of assistance they provided to their patients. Using this information, we also calculated a composite social network index, incorporating marital status, religious activities, contact with friends, and participation in community groups. Caregiver burden was measured using a 9-item subset of the Zarit burden inventory, and the summary scores were dichotomized at the upper quartile. Using logistic regression, unadjusted and adjusted analyses identified factors significantly associated with increased burden scores. Results: We found that increased caregiver burden was related to younger age (OR 1.49, CI 1.12–1.99), a worse score on the social network index (OR 1.43, CI 1.05–1.95), and the number of activities in which the caregivers themselves were restricted due to their caregiving responsibilities (OR 1.32, CI 1.11–1.58). Conclusions: Although several factors were associated with caregiver feelings of burden, the specific results we found were not anticipated. Future research should examine these factors, as well as others that might be more easily modifiable, when evaluating increased risk among caregivers.