Gatekeepers, Process Consent and Real Names: Ethical aspects of writing vivid stories based on qualitative research in palliative care

Abstract

Palliative care research is often described as difficult and challenging. This is largely due to ethical issues that arise in dealing with vulnerable patients and families, who are likely to be emotionally and physically burdened by their situation. Gatekeepers who control access to palliative care clients have a reputation for being reluctant to let them be further troubled by requests to take part in research activities. This means that getting a research proposal approved by an ethics committee, or convincing nurses to distribute invitations to participate, may require persuasive arguments as well as careful construction of an ethically defensible research protocol. My proposed palliative care research will be based on solicited reflective diaries and semi-structured interviews with home-based family carers, and forms part of study toward a PhD in the area of creative nonfiction writing. This paper discusses the ethical issues that were considered in preparing an application for the Human Research Ethics Committees of Hunter New England Health and the University of New England. The discussion of strategies for approaching gatekeepers, ensuring beneficence, and negotiating consent will offer insights for the conduct of any research involving a vulnerable population and a sensitive topic. A dual consent process and giving participants the choice of real names rather than pseudonyms in publications are interesting and distinctive features of my research project.