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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 University Press Scholarship Online: March 2012

DOI: 10.1332/policypress/9781861345141.001.0001

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date: 18 August 2017

Ethical considerations in service-user-led research: Strategies for Living Project

Ethical considerations in service-user-led research: Strategies for Living Project

Chapter:
(p.19) One Ethical considerations in service-user-led research: Strategies for Living Project
Source:
Researchers and their 'subjects'
Author(s):

Sarah Wright

Rachel Waters

Vicky Nicholls

members of the Strategies for Living Project

Publisher:
Policy Press
DOI:10.1332/policypress/9781861345141.003.0002

The underlying principle for using user-led research in mental health has been widely documented. This type of research includes placing independent research that is designed and carried out by people with direct personal experience of emotional and mental distress within the framework of emancipatory research. It aims to increase knowledge as well as alter the status quo, and to influence and change relationships. In mental health, user-led research has developed in the context of a world where people using mental health services have been traditionally asked to respond to very personal questions by outside researchers without any influence on the sorts of questions that get asked or what happens to the information that they share with the researchers. In this sense, user-led research is about people with experience of distress taking control of their lives. This is the context in which the Strategies for Living Project based at the Mental Health Foundation have developed. This chapter describes the ethical issues that arose during Phase II of the Strategies for Living Project. These ethical issues centre on participation, transparency and honesty, consent, payment, safety and confidentiality, ethics committee approval and methodology. It also outlines in more detail the implications of each of these ethical issues as they emerged within the Strategies for Living projects.

Keywords:   user-led research, mental health, independent research, emancipatory research, Strategies for Living Project, participation, transparency and honesty, consent, payment, safety and confidentiality

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