Family caregiver perspectives on symptoms and treatments for patients dying from complications of cystic fibrosis.
Family caregiver perspectives on symptoms and treatments for patients dying from complications of cystic fibrosis.
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DOI：
10.1016/j.jpainsymman.2010.03.024
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发表时间：
2010-12
影响因子：
4.7
通讯作者：
Hanson, Laura C.
中科院分区：
文献类型：
--
作者：
Dellon, Elisabeth P.;Shores, Mitchell D.;Nelson, Katherine I.;Wolfe, Joanne;Noah, Terry L.;Hanson, Laura C.
大多数晚期囊性纤维化 (CF) 患者死于呼吸衰竭，并随着肺部疾病的进展出现令人痛苦的症状。关于 CF 患者临终时的症状管理和持续特定疾病治疗的报道很少。我们的目的是描述死于 CF 并发症的患者的症状患病率、症状管理和特定疾病治疗的使用频率。我们对失去亲人的家庭照顾者进行了有关 CF 临终关怀的半结构化访谈，并询问了有关症状和治疗的问题。二十七名护理人员回答了有关症状和治疗的问题。护理人员报告说，在生命的最后一周，令人痛苦的症状很常见，包括呼吸困难（100%）、疲劳（96%）、厌食（85%）、焦虑（74%）、疼痛（67%）和咳嗽（56%）。大多数护理人员认为症状控制“还算不错”。许多人报告说，医疗服务提供者“已尽最大努力”来控制症状，但四人 (15%) 回忆起医生没有询问过症状。护理人员表示相信症状无法得到控制，并表示担心使用阿片类药物和抗焦虑药会产生副作用和加速死亡的可能性。患者接受了许多针对特定疾病的治疗，护理人员称其中许多治疗虽然不舒服，但却是必要的。痛苦的症状在垂死的囊性纤维化患者中很常见，特定疾病的治疗也会引起不适。许多家庭护理人员对症状控制的期望较低。这项探索性研究可用于指导临床干预措施，以改善晚期 CF 患者的症状管理。 J 疼痛症状管理 2010 年；40：829–837。
Most patients with advanced cystic fibrosis (CF) die from respiratory failure and experience distressing symptoms as lung disease progresses. Little has been reported about symptom management and the continuation of disease-specific treatments near the end of life for patients with CF. We aimed to describe symptom prevalence, symptom management, and frequency of use of disease-specific treatments for patients dying from complications of CF. We conducted semistructured interviews about end-of-life care in CF with bereaved family caregivers and asked questions about symptoms and treatments. Twenty-seven caregivers answered questions about symptoms and treatments. Caregivers reported that distressing symptoms were common during the last week of life, including dyspnea (100%), fatigue (96%), anorexia (85%), anxiety (74%), pain (67%), and cough (56%). Most caregivers felt that symptom control was “somewhat good.” Many reported that medical providers “did the best they could” to manage symptoms but four (15%) recalled no physician inquiry about symptoms. Caregivers expressed beliefs that symptoms could not be controlled and described concerns about side effects and potential for hastening death with the use of opioids and anxiolytics. Patients received numerous disease-specific treatments, and caregivers described many of them as uncomfortable but necessary. Distressing symptoms are common in dying CF patients, and disease-specific treatments also cause discomfort. Many family caregivers have low expectations for symptom control. This exploratory research can be used to inform clinical interventions to improve symptom management for patients with advanced CF. J Pain Symptom Manage 2010;40:829–837.
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影响因子：
120.7
作者：
DAVIS, PB;DISANTAGNESE, PA
通讯作者：
DISANTAGNESE, PA
影响因子：
3.1
作者：
Koh, JL;Harrison, D;McGraw, T
通讯作者：
McGraw, T
影响因子：
3.8
作者：
Elo, Satu;Kyngaes, Helvi
通讯作者：
Kyngaes, Helvi
影响因子：
8
作者：
Robinson, WM;Ravilly, S;Wohl, ME
通讯作者：
Wohl, ME
影响因子：
5.2
作者：
Sawicki, Gregory S.;Sellers, Deborah E.;Robinson, Walter
通讯作者：
Robinson, Walter