Perceived Benefits and Burdens of Participation for Caregivers of Cancer Patients in Hospice Clinical Trials: A Pilot Study.
Perceived Benefits and Burdens of Participation for Caregivers of Cancer Patients in Hospice Clinical Trials: A Pilot Study.
复制标题
临终关怀临床试验中的癌症患者护理人员的感知益处和参与负担：一项试点研究。
DOI：
10.1016/j.jpainsymman.2020.10.024
复制
发表时间：
2021-06
影响因子：
4.7
通讯作者：
Demiris G
中科院分区：
文献类型：
--
作者：
Oliver DP;Benson JJ;Ulrich C;Washington KT;Rolbiecki AJ;White P;Smith JB;Lero C;Landon OJ;Demiris G
ContextHospice是一项针对预期寿命为6个月或更短的人的服务。家庭照顾者在照顾他们所爱的人直到他们死去的过程中遭受抑郁和焦虑的折磨。关于研究参与者如何决定同意参加临终关怀环境中的临床试验，我们知之甚少。目的本初步研究旨在回答两个研究问题：1)人口学特征、心理健康状况和感知的照护经验如何影响照护者参与安宁疗护临床试验的决定？2)照护者生活的生理、心理、经济、家庭和社会维度如何影响他们参与安宁疗护临床试验的决定？方法将参加临床试验的安宁疗护者与拒绝临床试验同意且只同意本初步研究的人的特征和陈述同意的原因进行比较。人口统计、心理健康和对护理经验的看法被衡量为同意决定的影响因素。使用框架分析对招募电话进行记录和编码，以确定影响同意临床试验决定的感知益处和负担。结果总的来说，与不同意参加试验的患者相比，试验参与者更多的是患者的成年子女（55%对21%，P= 0.005），更年轻（56对63岁，P= 0.04）和受雇（47%对24%，P= 0.02）。报告的抑郁、焦虑和生活质量水平在那些选择参加临床试验的人和那些只参加这个初步研究的人之间没有显著差异；然而，同意参加临床试验的患者的照顾者负担更高（4.05 vs. 7.16，P< 0.0001）。两组人所表达的感知利益主要是心理上的，因为参与者对为科学做出贡献感到积极。两组人表达的负担主要是身体上的，因为他们因为技术或照顾的负担而犹豫是否参加干预。结论参与临床试验的利益与负担模型适用于安宁疗护者体验。了解潜在研究参与者的利益和负担的感知和维度，不仅对干预设计至关重要，而且对招聘联系和知情同意过程的定制也至关重要。
ContextHospice is a service for those with a life expectancy of six months or less. Family caregivers suffer from depression and anxiety as they care for their loved one until they die. Little is known about how research participants decide to consent to participate in clinical trials in the hospice setting.ObjectivesThis pilot study sought to answer two research questions: 1) In what way do demographic characteristics, mental health, and perceived caregiving experience impact the decision by caregivers to participate in hospice clinical trials? 2) In what ways do the perceived physical, psychological, economic, familial, and social dimensions of caregivers' lives influence their decision to participate in hospice clinical trials?MethodsThe characteristics and stated reasons for consent of hospice caregivers participating in a clinical trial were compared with individuals who refused clinical trial consent and only consented to this pilot study. Demographic, mental health, and perceptions of caregiving experience were measured as influencers to the consent decision. Recruitment calls were recorded and coded using framework analysis to identify perceived benefits and burdens impacting the decision to consent to the clinical trial.ResultsOverall, trial participants were more often adult children to the patient (55% vs. 21%,P= 0.005), younger (56 vs. 63 years,P= 0.04), and employed (47% vs. 24%,P= 0.02) as compared with those who did not consent to participate in the trial. Reported levels of depression, anxiety, and quality of life were not significantly different between those who chose to participate in the clinical trial and those who participated only in this pilot study; however, caregiver burden was higher for those consenting to the clinical trial (4.05 vs. 7.16,P< 0.0001). Perceived benefits expressed by both groups were largely psychological as participants felt positive about contributing to science. Burdens expressed by both groups were predominately physical as they related to hesitation to participate in the intervention because of technology or the burdens of caregiving.ConclusionThe benefits and burdens model for clinical trial participation is applicable to the caregiver experience in the hospice setting. Understanding the perceptions and dimensions of benefits and burdens to potential study participants is critical to not only the intervention design but also the tailoring of recruitment contacts and informed consent process.
登录
查看更多内容
影响因子：
4.7
作者：
Oliver, Debra Parker;Washington, Karla T.;White, Patrick
通讯作者：
White, Patrick
影响因子：
4
作者：
Gale NK;Heath G;Cameron E;Rashid S;Redwood S
通讯作者：
Redwood S
DOI：
10.4155/cli.15.52
发表时间：
2015-01-01
期刊：
Clinical Investigation
影响因子：
--
作者：
Kruse, R. L.;Gage, L. A.;Oliver, D. P.
通讯作者：
Oliver, D. P.
影响因子：
2.1
作者：
Courtney, K;Demiris, G;Porock, D
通讯作者：
Porock, D
影响因子：
2.2
作者：
Washington, Karla T.;Demiris, George;Oliver, Debra Parker
通讯作者：
Oliver, Debra Parker