Methodological and ethical challenges in designing and conducting research at the end of life: A systematic review of qualitative and textual evidence

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.