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https://hdl.handle.net/1959.11/4038
Title: | Gatekeepers, Process Consent and Real Names: Ethical aspects of writing vivid stories based on qualitative research in palliative care | Contributor(s): | Carey, Janene Patricia (author) | Publication Date: | 2008 | Open Access: | Yes | Handle Link: | https://hdl.handle.net/1959.11/4038 | 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. | Publication Type: | Conference Publication | Conference Details: | Bridging the Gap between Ideas and Doing Research 2007: 2nd Annual Postgraduate Research Conference, Armidale, Australia, 3rd - 6th July, 2007 | Source of Publication: | Bridging the Gap between Ideas and Doing Research: Proceedings of the 2nd Annual Postgraduate Research Conference, p. 18-26 | Publisher: | University of New England | Place of Publication: | Armidale, Australia | Fields of Research (FoR) 2008: | 111799 Public Health and Health Services not elsewhere classified | Socio-Economic Objective (SEO) 2008: | 920211 Palliative Care | Peer Reviewed: | Yes | HERDC Category Description: | E1 Refereed Scholarly Conference Publication | Publisher/associated links: | http://www.une.edu.au/faculties/professions/Resources/2007proceedings.pdf |
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Appears in Collections: | Conference Publication |
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