BACKGROUND Caring for patients with advanced or terminal diseases can confront family caregivers (FC) with ethical challenges. The present study aims at tracing paths connected to ethical challenges among FC of advanced cancer patients by exploring morally troubling situations and related burden, as well as strategies to handle the situation and experience of moral distress from the grieving FC's perspective. METHODS Within a qualitative design, interviews with 12 grieving FC were conducted using a semi-structured interview guide. Data were analysed using grounded theory and abductive reasoning. RESULTS Core phenomena identified were two paths connected to ethical challenges among FC. Ethical challenges occurred in the context of difficult decision-making (Path 1) and in the context of lacking decision-making options when no decision was to be made by FC (Path 2). We found each path to be triggered by distinct sets of morally troubling situations that occurred during the patient's disease trajectory. In the course of difficult decision-making (Path 1), detrimental external factors could add emotional stress, thus making the decision-making process burdensome. FC used various proactive strategies to overcome those detrimental factors and/or to make the decision. Decisions in conflict with FCs' own moral expectations and values led to moral distress, generating painful emotions. When no decision was to be made by FC (Path 2), FC felt powerless and overrun, which was associated with major emotionality in terms of anxiety and confusion. Either detrimental factors aggravated these feelings to paralyzing shock, or internal resources enabled FC to accept the situation. While acceptance prevented moral distress, paralyzing shock often caused a sense of not meeting their their own moral expectations and values, resulting in moral distress. In both paths, factors were identified that helped FC finding closure and prevented moral residue. Nevertheless, some FC experienced residual moral distress months after the morally troubling situation had occurred. CONCLUSION Findings provide first information towards understanding paths leading to ethical challenges in FC and can help clinicians to minimize associated emotional burden and moral distress.

中文翻译：

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定性研究：晚期癌症患者的家庭护理人员的道德挑战。

背景技术照顾患有晚期或末期疾病的患者可能面临家庭护理者（FC）的道德挑战。本研究旨在通过探索道德上令人不安的情况和相关负担，以及从悲痛的FC角度处理道德困境的情况和经历的策略，来追踪与晚期癌症患者FC中的道德挑战相关的路径。方法在定性设计中，使用半结构化访谈指南对12具悲伤的FC进行访谈。使用扎根理论和归纳推理对数据进行分析。结果确定的核心现象是与FC中的道德挑战相关的两条路径。在决策困难的情况下（路径1）以及在FC不做出决定的情况下缺乏决策选择的情况下（路径2），出现了道德挑战。我们发现每条路径都是由患者疾病过程中发生的一系列道德上令人困惑的情况触发的。在困难的决策过程中（路径1），有害的外部因素可能会增加情绪压力，从而使决策过程变得繁重。FC使用各种主动策略来克服这些不利因素和/或做出决定。与社区组织自己的道德期望和价值观相抵触的决策导致道德困境，产生痛苦的情绪。当FC决定不做任何决定（路径2）时，FC感到无能为力并且超支了，在焦虑和困惑方面与主要的情绪有关。不利因素加剧了使麻痹震惊的感觉，或者内部资源使FC接受了这种情况。虽然接受可以预防道德困扰，但瘫痪的震惊常常引起一种无法满足自己的道德期望和价值观的感觉，从而导致道德困扰。在这两种途径中，确定了有助于FC找到结局并防止道德残留的因素。但是，一些道德委员会在发生道德问题之后几个月就经历了残余的道德困扰。结论研究结果为了解导致FC伦理挑战的途径提供了第一手信息，并且可以帮助临床医生最大程度地减少相关的情绪负担和道德困扰。不利因素加剧了使麻痹震惊的感觉，或者内部资源使FC接受了这种情况。虽然接受可以预防道德困扰，但瘫痪的震惊常常引起一种无法满足自己的道德期望和价值观的感觉，从而导致道德困扰。在这两种途径中，确定了有助于FC找到结局并防止道德残留的因素。但是，一些道德委员会在发生道德问题之后几个月就经历了残余的道德困扰。结论研究结果为了解导致FC伦理挑战的途径提供了第一手信息，并且可以帮助临床医生最大程度地减少相关的情绪负担和道德困扰。不利因素加剧了使麻痹震惊的感觉，或者内部资源使FC接受了这种情况。虽然接受可以预防道德困扰，但瘫痪的震惊常常引起一种无法满足自己的道德期望和价值观的感觉，从而导致道德困扰。在这两种途径中，确定了有助于FC找到结局并防止道德残留的因素。但是，一些道德委员会在发生道德问题之后几个月就经历了残余的道德困扰。结论研究结果为了解导致FC伦理挑战的途径提供了第一手信息，并且可以帮助临床医生最大程度地减少相关的情绪负担和道德困扰。瘫痪的震惊常常引起一种无法满足自己的道德期望和价值观的感觉，从而导致道德困扰。在这两种途径中，确定了有助于FC找到结局并防止道德残留的因素。但是，一些道德委员会在发生道德问题之后几个月就经历了残余的道德困扰。结论研究结果为了解导致FC伦理挑战的途径提供了第一手信息，并且可以帮助临床医生最大程度地减少相关的情绪负担和道德困扰。瘫痪的震惊常常引起一种无法满足自己的道德期望和价值观的感觉，从而导致道德困扰。在这两种途径中，确定了有助于FC找到结局并防止道德残留的因素。但是，一些道德委员会在发生道德问题之后几个月就经历了残余的道德困扰。结论研究结果为了解导致FC伦理挑战的途径提供了第一手信息，并且可以帮助临床医生最大程度地减少相关的情绪负担和道德困扰。某些道德委员会在发生道德问题后几个月就经历了残余的道德困扰。结论研究结果为了解导致FC伦理挑战的途径提供了第一手信息，并且可以帮助临床医生最大程度地减少相关的情绪负担和道德困扰。某些道德委员会在发生道德问题后几个月就经历了残余的道德困扰。结论研究结果为了解导致FC伦理挑战的途径提供了第一手信息，并且可以帮助临床医生最大程度地减少相关的情绪负担和道德困扰。