Compassion and vigilance: investigators' strategies to manage ethical concerns in palliative and end-of-life research.
Compassion and vigilance: investigators' strategies to manage ethical concerns in palliative and end-of-life research.
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同情心和警惕：研究人员在姑息治疗和临终研究中管理伦理问题的策略。
DOI：
10.1089/jpm.2011.0515
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发表时间：
2012
影响因子：
2.8
通讯作者：
Knafl,Kathleen
中科院分区：
文献类型：
--
作者：
Hickman,SusanE;Cartwright,JulianaC;Nelson,ChristineA;Knafl,Kathleen
背景：在2004年美国国立卫生研究院科学状况会议上，伦理问题被确定为推进姑息治疗和临终科学的潜在障碍。然而，缺乏数据的性质的伦理问题和战略，以平衡需要推进科学与人类subjectsprotections.Methods：一个定性的案例研究设计，采用以下43结束了生命的研究，从建议的发展，通过审查过程和实施。研究者参加了半结构化的电话访谈，并提供了关于他们在赠款和IRB审查方面的经验的文件数据。使用不断的比较分析内和跨案件，研究人员确定了常见的和独特的问题和战略管理these concerns.Findings：调查策略分为两大类：1）招募和同意策略相关的受试者识别和招募;和2）方案相关的策略相关的过程中的数据收集。这些策略共享的总体元主题同情心，证明了对人口需求的高度敏感性，加上警惕，证明了密切关注研究参与对参与者的福祉，临床护理和研究人员的需求的可能影响。结论：伦理问题导致了富有同情心和警惕性的战略的发展，旨在平衡潜在的伤害风险与推进姑息治疗和终止治疗科学的需要。生活护理。这些策略可以被研究者用来解决伦理问题，并最大限度地减少姑息治疗和临终关怀科学发展的障碍。
Background:Ethical concerns were identified as a potential barrier to advancing palliative and end-of-life science at the 2004 National Institutes of Health State of the Science Meeting. However, data are lacking about the nature of ethical concerns and strategies for balancing the need to advance science with human subjects protections.Methods:A qualitative case-study design was used to follow 43 end-of-life studies from proposal development through the review process and implementation. Investigators participated in semi-structured telephone interviews and provided document data regarding their experiences with grant and IRB reviews. Using constant comparative analysis within and across cases, the investigators identified commonly encountered and unique concerns and strategies for managing these concerns.Findings:Investigator strategies fell into two broad categories: 1) Recruitment and consent strategies related to subject identification and enrollment; and 2) Protocol-related strategies related to the process of data collection. These strategies shared the overarching meta-themes ofcompassion,as evidenced by a heightened sensitivity to the needs of the population, coupled withvigilance, as evidenced by close attention to the possible effects of study participation on the participants' well-being, clinical care, and the needs of research staff.Conclusions:Ethical concerns have led to the development of compassionate and vigilant strategies designed to balance the potential for risk of harm with the need to advance the science of palliative and end-of-life care. These strategies can be used by investigators to address ethical concerns and minimize barriers to the development of palliative and end-of-life care science.