Background

Academics aim to understand the experiences of people living with cognitive and/or language impairment in their search for epistemic justice. Methods that do not rely solely on verbal information (e.g., interviews, focus groups) but also employ an attunement to the non-verbal - such as participant observation and creative methods, are seen as a suitable way to do justice to people's non-verbal interactions. However, in practice, researchers still experience ethical issues in everyday encounters with participants with cognitive and/or language impairment even when trying to address epistemic issues while employing such methods. This article aims to demonstrate 1) the importance of attending to the non-verbal in order to prevent epistemic injustice in research and 2) how a case-study approach and discussing ethical dilemmas with peers may help to unpack some of the ethical tensions that the researchers experience.

Aim and methods

This article focuses on ethical dilemmas the authors encountered during their research projects in the past. Three cases chosen by the authors illustrate these dilemmas. Dilemmas are presented as auto-ethnographical written accounts, which were discussed during ten retrospective dialogical sessions (60–90 min) organized by the research group consisting of six academic researchers.

Results

Ethically sound research, in which older people living with cognitive and/or language impairment are engaged, entails much more than following procedures about informed consent, privacy, submitting a proposal to an ethics committee, and using suitable methods and techniques. Ethical issues in these studies relate to everyday situations in which researchers tried to do justice to the knowledge of people who have difficulties expressing themselves verbally, but were challenged by what they have initially experienced as ‘having it wrong,’ ‘not knowing,’ and ‘losing something in translation’ in their practice. Finally, we learned that the interactions the researchers encountered were complex. They had to constantly evaluate the appropriateness of their approach, balance rational and intuitive forms of interaction and interpretation, and consider ways of communicating the research findings.

Discussion and conclusion

Approximating epistemic justice in research with people with cognitive and/or language impairment requires extra effort in daily research routines. Sharing everyday ethical issues via case stories and reflecting on these issues encourages moral learning and brings new knowledge about the craftsmanship of researchers. Especially the collaborative and dialogical reflection helped the researchers to dig deeper and find words for intangible processes that often remain unaddressed. However, sharing stories about ethical issues requires mutual trust and safety because sharing and reflecting may bring discomfort, messiness, and uncertainty.

中文翻译：

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寻找认知正义。研究人员在对患有语言和/或认知障碍的人进行研究时对情境伦理的对话反思

背景

学术界旨在了解患有认知和/或语言障碍的人们在寻求认知正义时的经历。不仅依赖言语信息（例如访谈、焦点小组）而且还采用非言语信息（例如参与观察和创造性方法）的方法，被视为公正对待人们非言语信息的合适方式。互动。然而，在实践中，即使在尝试采用此类方法解决认知问题时，研究人员在日常与认知和/或语言障碍参与者的接触中仍然会遇到伦理问题。本文旨在论证：1）关注非语言因素对于防止研究中认知不公正的重要性；2）案例研究方法以及与同行讨论道德困境如何有助于解决研究中存在的一些道德紧张局势。研究人员的经验。

目的和方法

本文重点讨论作者在过去的研究项目中遇到的道德困境。作者选择的三个案例说明了这些困境。困境以自我民族志书面记录的形式呈现，并在由六名学术研究人员组成的研究小组组织的十次回顾性对话会议（60-90 分钟）中进行了讨论。

结果

患有认知和/或语言障碍的老年人参与的符合道德规范的研究，需要的不仅仅是遵循有关知情同意、隐私的程序、向道德委员会提交提案以及使用适当的方法和技术。这些研究中的伦理问题与日常情况有关，在这些情况中，研究人员试图公正地对待那些在口头表达上有困难的人的知识，但他们最初的经历是“做错了”、“不知道”和“不知道”，这给他们带来了挑战。在他们的实践中“在翻译中失去了一些东西”。最后，我们了解到研究人员遇到的相互作用是复杂的。他们必须不断评估其方法的适当性，平衡理性和直观的互动和解释形式，并考虑传达研究结果的方式。

讨论与结论

在针对有认知和/或语言障碍的人的研究中近似认知正义需要在日常研究中付出额外的努力。通过案例分享日常道德问题并反思这些问题可以鼓励道德学习并带来有关研究人员技能的新知识。尤其是协作和对话反思帮助研究人员更深入地挖掘并找到经常未被解决的无形过程的词语。然而，分享有关道德问题的故事需要相互信任和安全，因为分享和反思可能会带来不适、混乱和不确定性。