Main regional center for pain relief & palliative/supportive care, 18627La Maddalena Cancer Center, Palermo, Italy.
Regional Home care program, SAMOT, Palermo, Italy.
Am J Hosp Palliat Care. 2022 Nov;39(11):1337-1341. doi: 10.1177/10499091221080450. Epub 2022 Mar 23.
This study aims to determine the symptom burden of caregivers who were following their loved ones at home and factors associated with this burden. From a consecutive number of patients followed at home by a specialistic palliative care team, a sample of 46 was screened. Epidemiological data of both patients and caregivers were collected, also including some variables, such as the level of religiousness, education, economic conditions, and financial distress. The Edmonton Symptom Assessment System (ESAS) was measured in both patients and caregivers. Caregivers were asked to provide a comment in a semi-structured interview, about "what do you think of your loved one's suffering?" They were also invited to release any further comment. Caregivers' symptom burden was relevant. Sleep disturbances were even more relevant in caregivers. Caregivers with a lower level of education and financial distress experienced more global symptom burden. Caregivers manifested a deep sense of injustice and gripes regarding previous hospitalizations. There is an association between patient-reported severity of symptoms and caregiver symptoms. These data suggest delivering support to those caregivers who express higher levels of symptoms. There is a need for further research to explore the possible interventions to mitigate caregivers' symptom burden.
这项研究旨在确定居家照护者的症状负担及其相关因素。从由一个专门的姑息治疗团队居家照护的连续患者中，筛选出了 46 名样本。收集了患者和照护者的流行病学数据，还包括宗教信仰程度、教育程度、经济状况和经济困难等变量。在患者和照护者中均使用了埃德蒙顿症状评估系统（ESAS）进行测量。照护者在半结构化访谈中被要求对“你如何看待你所爱的人的痛苦？”发表意见，还被邀请发表任何进一步的意见。照护者的症状负担是相关的。睡眠障碍在照护者中更为相关。教育程度较低和经济困难的照护者经历了更严重的整体症状负担。照护者对以前的住院治疗表示出深深的不公平感和不满。患者报告的症状严重程度与照护者的症状之间存在关联。这些数据表明，应向那些表达更高水平症状的照护者提供支持。需要进一步研究以探索减轻照护者症状负担的可能干预措施。
