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Researchers and their 'subjects'Ethics, power, knowledge and consent$
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Marie Smyth and Catherine Bond

Print publication date: 2004

Print ISBN-13: 9781861345141

Published to Policy Press Scholarship Online: March 2012

DOI: 10.1332/policypress/9781861345141.001.0001

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PRINTED FROM POLICY PRESS SCHOLARSHIP ONLINE (www.policypress.universitypressscholarship.com). (c) Copyright Policy Press, 2021. All Rights Reserved. An individual user may print out a PDF of a single chapter of a monograph in PPSO for personal use.date: 17 September 2021

Researching end of life in old age: ethical challenges

Researching end of life in old age: ethical challenges

(p.105) Six Researching end of life in old age: ethical challenges
Researchers and their 'subjects'

Ailsa Cameron

Liz Lloyd

Naomi Kent

Pat Anderson

Policy Press

One of the ethical dilemmas facing researchers and social researchers is the most appropriate way of researching the relationship between old age and death. This chapter reviews the ethical issues that arose when developing the methodology for a one-year pilot study exploring the lives of one hundred people over the age of eighty. These ethical issues included whether older people with dementia can or should consent to research participation; whether it was right to obtain proxy consent from carers; how the ethical issues that emerge were addressed and resolved through a Research Ethics Committee (REC); and how the researchers dealt with ethical issues as they arose within the research interaction. The research project discussed in this chapter aimed to explore the issues of old age and death from the perspective of older people. By listening to the accounts and narratives of older people, the chapter aims to gain a better understanding of their involvement in key decisions made about their lives by health and social care professionals. While older people were the focus of this study, they were also actively involved in the project advisory group, helping researchers to plan and fine-tune the research methodology.

Keywords:   ethical dilemmas, researchers, social researchers, old age, death, research participation, proxy consent, Research Ethics Committee, research interaction, involvement

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