Objective burden, caregiver psychological distress, and patient religion and quality of life are associated with high-intensity burden of care among caregivers of advanced cancer patients in a Latino population

Abstract

Abstract Objectives Family caregivers (FCs) of cancer patients experience burden of care. The aims of this study are to describe the caregiving phenomenon among FCs of advanced cancer patients in a Latino community and to identify caregiver and patient characteristics associated with high-intensity subjective caregiver burden. Methods In this cross-sectional study, advanced cancer patient–caregiver dyads assessed at a Palliative Care Unit in Santiago, Chile, enrolled in a longitudinal observational study were included. FCs completed questions to describe the caregiving phenomenon and surveys to assess burden of care, psychological distress, and perception of patients’ symptoms; patients completed surveys to assess physical distress and quality of life (QOL). We explored associations between high-intensity subjective caregiver burden with caregiver and patient variables. Results Two hundred seven dyads were analyzed. FCs were on average 50 years old and 75% female. Thirty-two percent of FCs experienced high-intensity subjective burden of care. Eighty two percent of FCs took care of the patient daily and 31% took care of the patient alone. In univariate analysis, high-intensity caregiver burden was associated with caregiver depression (59% vs. 27%; p < 0.001), anxiety (86% vs. 67%; p = 0.003), caring for the patient alone (45% vs. 24%; p = 0.002), perception of patient symptom distress, patient religion, and worse patient QOL (mean [standard deviation] 58 [33] vs. 68 [27]; p = 0.03). In multivariate analysis, FC depression (OR [95% confidence interval] 3.07 [1.43–6.60]; p = 0.004), anxiety (3.02 [1.19–7.71]; p = 0.021), caring for the patient alone (2.69 [1.26–5.77]; p = 0.011), caregiver perception of patient’s fatigue (1.26 [1.01–1.58]; p = 0.04), and patient’s religion (3.90 [1.21–12.61]; p = 0.02) were independently associated with caregiver burden. Significance of results FCs of advanced cancer patients in a Latino community frequently experience high-intensity burden of care and are exposed to measures of objective burden. High-intensity burden is associated with both caregiver and patient factors. Policies should aim to make interventions on patient–caregiver dyads to decrease caregiving burden among Latinos.