Navigating Ambiguity and Uncertainty in End-of-Life Care Research Practice.

IF 1.1
Tom van Drimmelen, M Nienke Slagboom, Ria Reis, Lex M Bouter, Jenny T van der Steen
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Abstract

Researchers frequently face conceptual, methodological, and ethical decisions - collectively known as researcher discretion - that can substantially influence research outcomes. Despite its importance, the nature of these discretionary moments and their triggers in everyday research practice remain underexplored. Based on an abductive thematic analysis of fieldnotes, documents, and interviews from twelve months of ethnographic fieldwork in two end-of-life care research groups between 2020 and 2022, we found that uncertainty and moral ambiguity prompted researchers to shift from intuitive to reflective decision-making, requiring discretion. While uncertainty could in principle be reduced by further inquiry, practical constraints often made this unworkable. Moral ambiguity stemmed from conflicting values that no additional information could resolve. These findings suggest that strict adherence to protocols or ethical frameworks may be insufficient to ensure responsible conduct of research, and should be complemented by building researchers' capacity to navigate discretion and both identify and responsibly exercise their researcher discretion.

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导航歧义和不确定性在临终关怀研究实践。
研究人员经常面临概念上、方法上和伦理上的决定——统称为研究人员的自由裁量权——这些决定可以极大地影响研究结果。尽管它很重要,但这些自由支配时刻的性质及其在日常研究实践中的触发因素仍未得到充分探索。基于对两个临终关怀研究小组在2020年至2022年间进行的为期12个月的人类学田野调查的现场笔记、文件和访谈的溯因性主题分析,我们发现不确定性和道德模糊促使研究人员从直觉转向反思决策,需要谨慎。虽然原则上可以通过进一步调查来减少不确定性,但实际的限制往往使这种做法行不通。道德上的歧义源于价值观的冲突,没有额外的信息可以解决。这些发现表明,严格遵守协议或伦理框架可能不足以确保负责任的研究行为,应该通过培养研究人员驾驭自由裁量权的能力以及确定和负责任地行使他们的研究自由裁量权的能力来补充。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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