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

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 to both, making the guidelines valuable in the support of the government's Research Governance Framework, 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. The ethics of survivor research is aimed at mental health service users and survivor researchers, trainers and interviewers. It is also a valuable resource for service user/survivor groups and organisations intending to commission or carry out research, academic researchers looking to involve service users in their research activity, researchers working in the mental health field, and Research Ethics Committees and NHS Research and Development Committee members.Read More