An ethical framework for researching the bereaved

Abstract

Ethics and governance committees are tasked with the responsibility of assessing the benefits of research, proportionate to the potential for harm. Despite the development of a more integrated and streamlined approach to the review process, professional judgement is involved in the interpretation of standards for research, which can present a number of challenges for reviewers in an increasingly risk-averse climate. Individual professional judgements and an inclination to risk-averse decisions may mean investigators come across individuals or groups who act as over-zealous gatekeepers during the research process and experience variation in the verdicts of ethics committees or encountering decisions that are based on a priori assumptions. Over-cautious reactions to bereavement research can restrict access to participants or data and impose requirements that undermine the research design or in fact curb any enthusiasm to proceed with what may prove to be important work. Protection appears to be concerned with the prevention of distress to participants who are asked to recollect what may have been an emotionally challenging or traumatic event. There is however evidence to suggest that research participation may serve the interests of the bereaved in a variety of positive ways. We present a framework for ethical decision-making that sets out practical strategies for participant identification, recruitment, data collection using interviews and post participation follow-up care. The development of the framework was based on ethical principles that underpin research governance. The content was drawn from four studies that interviewed bereaved families of organ donors about their experiences of donating organs of a deceased relative. The practical strategies proposed in the framework were themselves exposed to ethical scrutiny, with participant and researcher evaluations determining their appropriateness. Continuing positive feedback from the use of the framework approach has contributed to its dependability in supporting ethical decision-making in bereavement research. Our team of researchers’ satisfaction of working within this structure is such that it has furnished us with the confidence to offer the framework for the support of others who may be involved in the review and conduct of bereavement research.