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Navigating Ambiguity and Uncertainty in End-of-Life Care Research Practice
Tom van Drimmelen1, M Nienke Slagboom1, Ria Reis1,2,3
1Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, the Netherlands.
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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