Ethical issues in bereavement research: Practical use of a decision-making framework

Abstract

There are many phenomena in nursing that fulfil the criteria of sensitive research. Sensitive research has been defined as research that poses an intrusive threat, explores an intensely personal experience or has the potential to arouse an emotional response. The central concern being the possible threat it poses to participants and researchers that could be both physically and mentally distressing. Without doubt bereavement fulfils the criteria of a sensitive research topic that demands careful planning in the design of a study, to assess the ethical issues involved, and to ameliorate the risk of harm.This paper adds to the discourse concerning ethics in bereavement research. It demonstrates the practical use of a framework for ethical decision-making when undertaking research with bereaved participants. We contextualise the framework and issues of ethical importance through presentation of a qualitative, exploratory, interview study with bereaved families who consented to organ and tissue donation from a deceased relative. The sensitive nature of the study is illustrated by providing an overview of participants’ descriptions of a critical event that led to a sudden bereavement. Practical strategies of relevance to the processes of: participant recruitment, the interview encounter and follow-up care in the post-interview period are illustrated and discussed. Concerns about the possible repercussions of bereavement research are balanced with the views of family members who gave credence to the therapeutic and cathartic benefits of taking part in sensitive, death related research. Through our research with bereaved families, we are privileged to offer acceptable standards for research ethics and governance, of value to the community of nurses involved in bereavement research.