Understanding research, consent and ethics: a participatory research methodology in a medium secure unit for men with a learning disability

Cook, Tina and Inglis, Pamela (2008) Understanding research, consent and ethics: a participatory research methodology in a medium secure unit for men with a learning disability. Project Report. Department of Health, London.

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Abstract

People with learning disability have historically been the subjects or recipients of research, rather than participants or contributors. Whilst there is considerable literature on issues of informed consent, little is known about what people with learning disability understand about research, participation in research or how to facilitate understanding. Ways of facilitating consent have been offered by a number of studies (Fisher, 2003, Murphy and Clare, 1995, DeRenzo et al 1998) but these studies have not researched the effectiveness of such methods from the perspective of the participants. Understanding what is meant by research is fundamental to involving people with learning disabilities in research and to developing and maintaining informed consent (Gilbert, 2004). This study set out to discover how men with a learning disability living in a Medium Secure Unit understand research, consent and ethics and what enables them to learn about these concepts. Seven men and ten staff were invited to become co-researchers with two researchers from Northumbria University, over 20 months. Lessons learned from this study about research can now be used to educate other adults with learning disability concerning research, how it can be helpful, and how it can make a difference in the lives of people with learning disability.

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