BACKGROUND Contradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview. METHODS A descriptive qualitative study. The data were collected in the context of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study. RESULTS The interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible. CONCLUSION The open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview.

中文翻译：

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对于姑息治疗患者和护理人员的研究，定性研究访谈是否可以接受？

背景 关于参与姑息治疗患者和护理人员的定性研究的情绪负担存在矛盾的证据，这引发了关于此类研究在弱势群体中是否在伦理上合理的问题。本研究旨在调查姑息治疗患者和护理人员对与公开访谈相关的好处和问题的看法，并了解导致痛苦的原因以及参与研究访谈有什么帮助。方法 描述性定性研究。这些数据是在两项研究的背景下收集的，这些研究探索了姑息治疗患者和护理人员的护理经验。访谈结束时询问了患者和护理人员对参与研究的想法以及这是否是令人痛苦或有益的事件。我们使用了从访谈和研究过程中获得的观察和互动数据中产生的定性描述性分析策略。结果 访谈被认为是有帮助的：分享问题是治疗性的，能够为研究做出贡献是一种赋权。然而，据报道，对未来的思考是最具挑战性的。有时阅读同意书时会带着忧虑，身体上无法签字让人心烦意乱。分别采访患者和护理人员有时很困难，也并非总是可行。结论 开放式访谈使患者和护理人员的观点能够被听到，而不受封闭式问题结构的限制。它还使那些无法参与其他研究设计的患者或护理人员能够参与其中。考虑到与照顾者的关系情况以及获得知情同意的适当方式，背景至少与研究访谈的形式一样重要。回顾性同意可能是增强参与者对访谈控制的解决方案。