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

AimThis 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.BackgroundConducting research with patients and family carers facing end-of-life issues is ethically and methodologically complex.DesignA systematic review was conducted.Data sourcesFour databases (MEDLINE, EMBASE, CINAHL, PsycInfo) were searched from inception until the end of 2021 in February 2022.Review methodsThe Preferred Reporting Items for Systematic Reviews was followed, and the JBI Approach to qualitative synthesis was used for analysis.ResultsSeventeen 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.ConclusionThe findings illuminate several considerations that can inform training programmes, ethical review processes and research designs when embarking on research in this field. What is already known about this topic?Conducting research with patients and their relatives at the end of life brings many ethical and methodological issues.Healthcare providers are often protective and can limit researchers' access to patients.Recruitment of participants is often very difficult as response rates are usually low.What this paper adds?Engaging in research about end-of-life care requires flexibility, sensitivity and attention to ethical challenges, as well as adjustment to the organizational and legislative-juridical contexts.Gatekeeping processes may be improved by involving stakeholders in all parts of a research project, and this also helps to maximize a project's implementation and sustainability after the end of the research.End-of-life research can be emotionally challenging for researchers, and this should be reflected in adequate training and emotional support.The implications of this paper:The results show that the Chinese version of the Self-Care in Chronic Obstructive Pulmonary Disease Inventory is simple and accessible, and nurses can use it to assess patients' capacity for self-care regularly.There is a paucity of literature on the methodological issues that are faced when conducting research in this area.Future training, education and support of researchers in palliative and end-of-life care should seek to address the challenges that are identified in this review.End-of-life research may be emotionally challenging for researchers, and this will also require consideration.