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

Abstract

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. Conducting research with patients and family carers facing end-of-life issues is ethically and methodologically complex. A systematic review was conducted. Four databases (MEDLINE, EMBASE, CINAHL, PsycInfo) were searched from inception until the end of 2021 in February 2022. The Preferred Reporting Items for Systematic Reviews was followed, and the JBI Approach to qualitative synthesis was used for analysis. 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. The findings illuminate several considerations that can inform training programmes, ethical review processes and research designs when embarking on research in this field.