Aim: This systematic review aims to identify methodological and ethical challenges in designing and conducting research at the end of life from the perspective of researchers and provide a set of recommendations.
Background: Conducting research with patients and family carers facing end-of-life issues is ethically and methodologically complex.
Design: A systematic review was conducted.
Data sources: Four databases (MEDLINE, EMBASE, CINAHL, PsycInfo) were searched from inception until the end of 2021 in February 2022.
Review methods: The Preferred Reporting Items for Systematic Reviews was followed, and the JBI Approach to qualitative synthesis was used for analysis.
Results: Seventeen of 1983 studies met inclusion criteria. Data were distilled to six main themes. These included (1) the need for flexibility at all stages of the research process; (2) careful attention to timing; (3) sensitivity in approach; (4) the importance of stakeholder collaboration; (5) the need for unique researcher skills; and (6) the need to deal with the issue of missing data.
Conclusion: The findings illuminate several considerations that can inform training programmes, ethical review processes and research designs when embarking on research in this field.
Keywords: end of life; ethics; nursing; palliative care; systematic review.
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