title: Researching people who are bereaved: Managing risks to participants and researchers.
abstract: Conducting qualitative research, especially in areas considered 'sensitive', presents many challenges. The processes involved in such research often expose both participants and the research team to a vast array of risks, which may cause damage to their personal, professional, social and cultural worlds. Historically, these risks have been considered independent of each other, with most studies exploring only the risks to participants or only risks to researchers. Additionally, most researchers only consider risks during data collection, frequently overlooking risks that might be present during other phases of the research project. We aim, therefore, to bring together this fractured literature to enable an integrated exploration of the current academic discourse relating to risks to participants with the literature exploring risks to researchers across all phases of the research process. This article draws on personal experiences to highlight ethical issues and risks encountered by both participants and researchers throughout all phases of a research project. Beginning in recruitment, we discuss the risk of secondary distress in participants arising from researcher contact and then explore the concept of informed consent during grief and bereavement research. We then focus on risks present during data collection, examining risks for participants, such as emotional distress, and potential safety risks for the research team. Finally, we consider the risks which arise in data analysis, including both confidentiality and the possibility of researcher burnout. Previous recommendations are summarised, with new management strategies suggested based on lessons learned along the way.
authors.affiliation: Monash University, Australia; Monash Health, Australia.
authors.forename: Ashleigh E
authors.initials: AE
authors.lastname: Butler
authors.forename: Beverley
authors.initials: B
authors.lastname: Copnell
authors.affiliation: Monash University, Australia.
authors.forename: Helen
authors.initials: H
authors.lastname: Hall
mesh_terms: D001315:Australia; D001601:Bereavement; D003219:Confidentiality / Q000941:ethics; D066296:Grounded Theory; D006801:Humans; D007258:Informed Consent / Q000941:ethics / Q000592:standards*; D007363:Intensive Care Units, Neonatal / Q000458:organization & administration; D018579:Patient Selection / Q000941:ethics*; D036301:Qualitative Research; D012108:Research Personnel / Q000941:ethics* / Q000523:psychology; D012308:Risk Management / Q000379:methods
keywords: Bereaved; participants; qualitative; research ethics; researchers; risk; sensitive