The potential therapeutic value for bereaved relatives participating in research: An exploratory study
The potential therapeutic value for bereaved relatives participating in research: An exploratory study
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DOI：
10.1017/s1478951515001194
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发表时间：
2016-10-01
影响因子：
2.2
通讯作者：
Jack, Barbara A.
中科院分区：
文献类型：
--
作者：
Germain, Alison;Mayland, Catriona R.;Jack, Barbara A.
目的：对丧失亲人的人进行研究提出了一个直接的道德挑战，因为他们无疑是一个弱势群体，与高度痛苦有关，容易受到身心健康问题的影响。对参与姑息治疗研究的丧失亲人的潜在治疗益处的全面了解是有限的，因此，参与这一群体的伦理问题仍然存在疑问。方法：本文对临终关怀评估（CODE）项目收集的定性数据进行二次分析，考察在家死亡患者的经历。本文结合丧亲理论最新发展的概念，探讨了丧亲参与研究的动机和潜在利益。对15名丧亲家属进行认知访谈，采用内容分析框架进行二次分析，对数据进行分类。结果：结果围绕着六个在当前丧亲理论中被认为是适应性的反复出现的概念：一个分享亲人生命最后几个小时的叙述的机会；在失落中寻找意义和意义；与死者有持续的联系/依恋；利他的动机;损失取向和恢复取向之间的振荡；还有一种适应力。总的来说，参与者发现参与这项研究是有价值的，它可以被描述为提供治疗益处。结果的意义：应该鼓励丧失亲人的亲属参加研究，因为他们提供了病人临终关怀经历的准确代理，同时也提供了他们自己作为家庭成员和照顾者的观点的宝贵说明。此外，我们强调伦理委员会需要意识到参与这类研究的丧失亲属的潜在利益。
Objective: Conducting research with the bereaved presents an immediate ethical challenge, as they are undoubtedly a vulnerable group, associated with high levels of distress and susceptible to both physical and mental health issues. A comprehensive understanding of the potential therapeutic benefits for bereaved relatives participating in palliative care research is limited, and therefore the ethics of engaging this group remain questionable.Method: This paper describes a secondary analysis of qualitative data collected in the Care of the Dying Evaluation (CODE) project, examining the experiences of patients who died at home. It explores the motivations and potential benefits for bereaved relatives participating in research with reference to the recently developed concepts in bereavement theory. Cognitive interviews were conducted with 15 bereaved relatives and secondary analysis using a content analysis framework was employed to classify the data.Results: The results center around six recurring concepts identified as adaptive in current bereavement theory: an opportunity to share the narrative accounts of the final hours of their relative's life; a search for sense and meaning in loss; an ongoing bond/attachment with the deceased; altruistic motivations; oscillation between loss and restorative orientations; and a sense of resilience. Overall, the participants found that taking part in the research was valuable and that it could be described as offering therapeutic benefits.Significance of results: The need for bereaved relatives to take part in research studies should be encouraged, as they provide an accurate proxy for the patient's experience of end-of-life care while also providing a valuable account of their own perspective as family member and carer. In addition, we highlight the need for ethics committees to be aware of the potential benefits for bereaved relatives participating in research of this kind.