The Ethics of Survivor Research: Guidelines for the Ethical Conduct of Research Carried out by Mental Health Service Users and Survivors

The Ethics of Survivor Research: Guidelines for the Ethical Conduct of Research Carried out by Mental Health Service Users and Survivors

The Ethics of Survivor Research: Guidelines for the Ethical Conduct of Research Carried out by Mental Health Service Users and Survivors

The Ethics of Survivor Research: Guidelines for the Ethical Conduct of Research Carried out by Mental Health Service Users and Survivors

Synopsis

This guide is an accessible manual on ethical practice for research from the perspective of mental health service users and survivors. There is a distinction to be made between survivor controlled research and 'user/consumer involvement in research', and the focus of these guidelines is on the former. However, many of the ethical issues are common, making the guidelines valuable in the support of the Research Governance Framework (Dept of Health, 2001), which encourages the involvement of consumers in research. The guidelines are not intended as rules, but as helpful guidance on some of the difficult and important issues to be considered prior to a research project or research training programme. There are helpful hints and suggestions, as well as quotations and ideas reflecting the experience of people who were consulted for the development of the guidelines. Considerable time and space is given to such key ethical issues as informed consent and confidentiality with particular reference to mental health settings. However, the guidelines also address a number of less commonly discussed issues such as feedback to participants, dissemination and a commitment to change based on research findings.

Excerpt

These guidelines are based on the research reported in Appendix a and on the experience and expertise of many other survivor and professional research groups and organisations. They are not intended as rules, but rather as guidance on issues to be considered prior to the design and conduct of any survivor research project or research training programme. in some cases a particular view is given by the author on behalf of the research undertaken, but in other cases it is made clear that the issue in question needs to be discussed and decided by the research team or individual researcher(s) involved.

The guidelines follow the progress of the research cycle: beginning with underlying principles and finishing with the implementation of results and recommendations.

What is survivor research?

It seems sensible to start by identifying what is meant by ‘survivor research’ in order that we can be clear about whom these guidelines are intended for. the growth of both national and local survivor research projects has been very rapid during the past few years, with some attendant concerns about quality and standards. There are many different forms of what may be called survivor research, user-led or user-controlled research, and a great many more forms of ‘user involvement in research’ where the control of the research does not lie with service users or survivors. While these guidelines are primarily intended for the former, that is, research being carried out from a mental health service user/survivor perspective, they are also relevant for people involved in the latter, since many of the issues are universal and pertinent to conduct of good practice anywhere in the mental health field.

However, there may well be different levels of power within these different manifestations of user/ survivor research, depending on who is funding and managing the research, and this will influence the degree to which user/survivor researchers can determine the direction of the research and the way in which it can be carried out.

The Mental Health Foundation’s Strategies for Living programme has come up with a broad definition of user-led (or survivor) research, as follows:

In the work of Strategies for Living we mean
research in which service users or survivors
select the topics for research; are members of
the steering group; design the research project;
ideally, are the researchers and interviewers or
have professional researchers as allies; and have
control over the funding. User-led research for
us also means ongoing appropriate training
and support, including peer support;
recognising that the process is important as
well as the product; sharing findings in relevant
ways to relevant audiences, especially other
service users; informing services and service
development; and informing participants about
the results and any action. (Nicholls et al, 2003)

Members of different parts of the Strategies for Living programme were consulted during the formation of the present guidelines.

Similarly, the Sainsbury Centre for Mental Health has developed a nationwide User Focused Monitoring (UFM) network that provides support for service users who want to become or who are involved in monitoring their own local services. They have recently established a set of criteria for what constitutes a ufm project (UFM Network . . .

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