title: Research with bereaved families: a framework for ethical decision-making.
abstract: Theoretical debates about the nature of grief and bereavement draw attention to the sensitivity of carrying out research with bereaved people, the possible threats that this may pose and the ethical considerations required to ameliorate potentially damaging outcomes. The authors of this article present a framework for ethical decision-making that has been successfully developed in the context of research with bereaved families. The discussion focuses on application and evaluation of the framework during research with family members who were approached about the donation of a deceased relative's organs and/or tissues for transplantation. Practical strategies of relevance to the processes of participant recruitment, the interview encounter and follow-up care in the post-interview period are identified and discussed. Concerns about the possible impact of bereavement research are balanced with the views of family members who gave credence to the therapeutic and cathartic benefits of participating in sensitive, death-related research.
authors.affiliation: University of Wolverhampton - The Royal Wolverhampton NHS Trust, UK m.sque@wlv.ac.uk.
authors.forename: Magi
authors.initials: M
authors.lastname: Sque
authors.affiliation: University of Wolverhampton, UK.
authors.forename: Wendy
authors.initials: W
authors.lastname: Walker
authors.affiliation: University of Southampton, UK.
authors.forename: Tracy
authors.initials: T
authors.lastname: Long-Sutehall
mesh_terms: D001293:Attitude to Death; D001601:Bereavement; D003657:Decision Making / Q000941:ethics*; D005190:Family / Q000523:psychology*; D006117:Grief; D006801:Humans; D036301:Qualitative Research; D014019:Tissue Donors / Q000941:ethics*
keywords: Bereavement; decision-making; ethical considerations; organ donation; research