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

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 atient 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.