Soto-Guerrero Sebastián, Palacios Josefa, Langer Paola, Carrasco Cecilia, Tupper-Satt Laura, González-Otaíza Marcela, Rodríguez-Núñez Alfredo, Pérez-Cruz Pedro E
Programa Medicina Paliativa y Cuidados Continuos, Facultad de Medicina, Pontificia Universidad Católica de Chile (PUC), Santiago, Chile.
Department of Sociology, University of California Davis, Davis, CA, USA.
Palliat Support Care. 2023 Jun 26:1-9. doi: 10.1017/S1478951523000834.
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.
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.
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%; < 0.001), anxiety (86% vs. 67%; = 0.003), caring for the patient alone (45% vs. 24%; = 0.002), perception of patient symptom distress, patient religion, and worse patient QOL (mean [standard deviation] 58 [33] vs. 68 [27]; = 0.03). In multivariate analysis, FC depression (OR [95% confidence interval] 3.07 [1.43-6.60]; = 0.004), anxiety (3.02 [1.19-7.71]; = 0.021), caring for the patient alone (2.69 [1.26-5.77]; = 0.011), caregiver perception of patient's fatigue (1.26 [1.01-1.58]; = 0.04), and patient's religion (3.90 [1.21-12.61]; = 0.02) were independently associated with caregiver burden.
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.
癌症患者的家庭照顾者承受着护理负担。本研究的目的是描述拉丁裔社区晚期癌症患者家庭照顾者中的护理现象，并确定与高强度主观照顾者负担相关的照顾者和患者特征。
在这项横断面研究中，纳入了在智利圣地亚哥一家姑息治疗单位接受评估并参与纵向观察研究的晚期癌症患者-照顾者二元组。家庭照顾者完成了描述护理现象的问题以及评估护理负担、心理困扰和对患者症状感知的调查；患者完成了评估身体困扰和生活质量（QOL）的调查。我们探讨了高强度主观照顾者负担与照顾者和患者变量之间的关联。
分析了207个二元组。家庭照顾者平均年龄为50岁，75%为女性。32%的家庭照顾者经历了高强度的主观护理负担。82%的家庭照顾者每天照顾患者，31%独自照顾患者。在单变量分析中，高强度照顾者负担与照顾者抑郁（59%对27%；<0.001）、焦虑（86%对67%；=0.003）、独自照顾患者（45%对24%；=0.002）、对患者症状困扰的感知、患者宗教信仰以及患者较差的生活质量（平均[标准差]58[33]对68[27]；=0.03）相关。在多变量分析中，家庭照顾者抑郁（比值比[95%置信区间]3.07[1.43 - 6.60]；=0.004）、焦虑（3.02[1.19 - 7.71]；=0.021）、独自照顾患者（2.69[1.26 - 5.77]；=0.011）、照顾者对患者疲劳的感知（1.26[1.01 - 1.58]；=0.04）以及患者的宗教信仰（3.90[1.21 - 12.61]；=0.02）与照顾者负担独立相关。
拉丁裔社区晚期癌症患者的家庭照顾者经常经历高强度的护理负担，并面临客观负担的衡量指标。高强度负担与照顾者和患者因素均相关。政策应旨在对患者-照顾者二元组进行干预，以减轻拉丁裔人群的照顾负担。
