3. Critically discuss ethical issues in the use of narrative and biography with people with life-limitindiagno


3. Critically discuss ethical issues in the use of narrative and biography with people with life-limitindiagno

Essay structure and guidance: Introduction ● Brief introduction to the theme, aim of the essay? ‘This piece of work aims to examine ethical and practical challenges occurring in narrative and biography with people in palliative care and end-of-life contexts. ● Why is it relevant, why explore ethical issues and focus on best practice? ● Provide background on ethics and a rationale for exploring ethics in this assignment – e.g. protect interests of patients who participate in narrative and researchers who record and share personal stories. ● Say how you will address this assignment – by considering principles of health care ethics, exploring specific ethical guidance for narrative and biography and identifying issues – with a focus on oral history. ● Definitions. Your WHO and narrative/biography definitions are fine but write up as paragraphs, not bullet points. And provide a specific definition of oral history. Main body ● Now show that you’re aware of the broader context of ethics in health and medicine (around respect for others and their decisions, meeting the interests of participants). ● Show knowledge of medical ethics principles in one paragraph: ● Autonomy – idea that patients act for themselves, able to make their own choices ● Nonmaleficence – assessing risk in decision making – the balance of benefit vs harm ● Beneficence – health care provides benefit, acts for patient’s welfare ● Justice – fair and non-discriminatory healthcare Principles of Biomedical Ethics (2001) Beauchamp and Childress, (Oxford University Press, 5th Edition) ● Then you could briefly discuss the nature of the palliative care population – they can be considered vulnerable. ● Vulnerability involves lack of power. (Zagorac, 2016) ● How can vulnerable patients who want to record their oral histories be protected? ● What professional guidelines are there and why do they exist (to protect well-being of individuals and their representation in publication or other)? ● Focus on these guidelines: Oral History Society (OHS): Give an overview of them – see first page of the OHS guidance for this – ‘Practical Steps’ ● Now briefly discuss a few ethical issues arising in oral history. (E.g. Informed consent, anonymity, reputations and relationships, power relationships, Therapy or therapeutic?, Emotion, Publication of potentially harmful information, Representation of interviewee, interviewer bias). More info can be found in Yow’s ethics chapter. ● After you’ve demonstrated that you’re aware of lots of issues, focus on one or two to discuss in detail, in the context of oral history. These might be informed consent and anonymity. Again, see Yow on MOLE reading list ● Discuss informed consent, why it’s important and where problems might arise. Remember that the aim of oral history is to produce public records, participants are aware from the outset that their recordings will be in public archives and possibly used in publications, website etc. This might have motivated them to take part. However there are issues, for example, what if they ask for their name to be withheld, can interviewers guarantee anonymity in a life story? See Yow. ● What conclusions do you draw about participation in oral history (biography work)? What could be strengths and weaknesses of participation? Conclusion ● Summarise your ideas/arguments ● Restate what you consider to be the main points ● Be clear why you think your conclusions are important or significant ● How far you are in agreement with the title statement ● Link your conclusions back to the essay title

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