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Developing the theoretical basis for service user/survivor-led research and equal involvement in research

Published online by Cambridge University Press:  11 October 2011

Peter Beresford
Peter Beresford*
Affiliation:
Director, Centre for Citizen Participation, Brunei University, UK
*
Address for correspondence: Professor P. Beresford, Centre for Citizen Participation. Brunei University. Osterley Campus. Borough Road, Islenorth. Middlesex. TW7 5DU (United Kingdom). Fax: +44-020-7223.7116 E-mail: [email protected]
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Summary

Aims and methods — This article, written from a service user/survivor perspective, explores a hypothesis which seeks to offer a more systematic basis for the full and equal involvement of mental health service users/survivors in both the research process and research structures more generally. The hypothesis challenges traditional emphasis on positivist assumptions about the priority of values of ‘distance’, ‘neutrality’ and ‘objectivity’ (which it argues discriminate against service users and their experiential knowledge). It explores instead the idea that ‘the shorter the distance between direct experience and its interpretation, then the less likely resulting knowledge is to be inaccurate, unreliable and distorted. Results and conclusions — The proposal discusses ways in which such (objective and subjective) distance may be reduced, to improve the quality of research, to enable more equal involvement of service users and their direct experience and to make it possible for non-service user researchers to work alongside service users on more equal terms.

Declaration of Interest: Peter Beresford is Professor of Social Policy at Brunei University and Chair of Shaping Our Lives, the national independent user controlled organisation which receives its core funding from the UK Department of Health. No financial support from pharmaceutical or other commercial companies has been received by the author over the last two years. Funding has been gained from governmental and non-governmenatal funding agencies.

Keywords

service user involvementuser controlresearchtheory
Type
Inclusion and Mental Health in the New Europe
Information
Epidemiology and Psychiatric Sciences , Volume 14 , Issue 1: Inclusion and Mental Health in the New Europe , March 2005 , pp. 4 - 9
Copyright
Copyright © Cambridge University Press 2005

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References

Barnes, C. (2004). Reflections on doing emancipatory disability research In Disabling Barriers - Enabling Environments (ed Swain, J.. French, S., Barnes, C.. Thomas, C.), pp. 47–53. Sage: London.Google Scholar
Barnes, C. & Mercer, G (Ed.) (1997). Doing Disability Research. Disability Press: Leeds.Google Scholar
Beresford, P. (2002). User involvement in research and evaluation: liberation or regulation? Social Policy & Society 1(2) 95–105.CrossRefGoogle Scholar
Beresford, P. (2003). It's Our Lives: A Short Theory of Knowledge, Distance and Experience. Citizen Press in association with Shaping Our Lives: London.Google Scholar
Beresford, P. & Evans, C. (1999). Research and empowerment. British Journal of Social Work 29. 671–677.CrossRefGoogle Scholar
Campbell, J. & Oliver, M. (1996). Disability Politics: Understanding Our Past, Changing Our Future. Routledge: London.Google Scholar
Crotty, M. (1998). The foundations of social research. Meaning and perspective. In The Research Process. Sage: London.Google Scholar
DHS (1992). Special Issue: Researching disability. Disability, Handicap and Society 7(2). 99–203.Google Scholar
Faulkner, A. & Layzell, S. (2000). Strategies for Living: a Report of User-led Research into People's Strategies for Living with Mental Distress. Mental Health Foundation: London.CrossRefGoogle Scholar
Faulkner, A. & Nicholls, V. (1999). The DIY Guide to Sunivor Research. Mental Health Foundation: London.Google Scholar
Harding, S. (1993). Rethinking standpoint epistemology: What is "Strong objectivity"? In Feminist Epistemologies (ed. Alcoff, C. and Potter, E.), pp. 49–82. Routledge: London.Google Scholar
Hunt, P. (1966). A critical condition. In The Disability Reader (ed Shakespeare, T.), pp. 7–19. Cassell: London and New York.Google Scholar
Hunt, P. (1972). Parasite people. Cheshire Smile Autumn 18(3), 15.Google Scholar
Hunt, P. (1981). Settling accounts with the parasite people: a critique of “A Life Apart’ by Miller, E.J. and Gwynne, G.V.. Disability Challenge 2, pp. 37–50.Google Scholar
Lindow, V. (2001). Survivor research. In This Is Madness Too (ed. Newnes, C., Holmes, G. and Dunn, C.), pp. 135–146. PCCS Books: Ross on Wye.Google Scholar
Mercer, G. (2002). Emancipatory disability research. In Disability Studies Today (ed. Barnes, C., Oliver, M. and Barton, L.), pp. 228–249. Policy: Cambridge.Google Scholar
Miller, E.J. & Gwynne, G.V. (1972). A Life Apart. Tavistock Publications and Lippincott: London.Google Scholar
Nicholls, V. (2001). Doing Research Ourselves. Strategies For Living. Mental Health Foundation: London.Google Scholar
Nicholls, V., Wright, S., Waters, R. & Wells, S. (2003). Suniving User-Led Research: Reflections on Supporting User-led Research Projects. Strategies for Living, Mental Health Foundation: London.Google Scholar
Oliver, M. (1992). Changing the social relations of research production. Disability, Handicap & Society, No 7, 101–115.CrossRefGoogle Scholar
Oliver, M. (1996). Understanding Disability: From Theory to Practice. Macmillan: Basingstoke.CrossRefGoogle Scholar
Reason, J. & P. Rowan, J. (Ed.) (1981). Human Inquiry: A Sourcebook of New Paradigm Research. John Wiley & Sons: Chichestcr.Google Scholar
Rose, D. (2001). Users’ Voices: The Perspectives of Mental Health Service Users on Community and Hospital Care. Sainsbury Centre for Mental Health: London.Google Scholar
Rose, D. (2003). Having a diagnosis is a qualification for the job. British Medical Journal 326, 1331.CrossRefGoogle ScholarPubMed
SURE (2002). SURE: Service User Research Enterprise, Annual Report, 2001-2002, SURE. Health Service Research. Institute of Psychiatry: London.Google Scholar
Wallcraft, J. (1998). Survivor-led research in human services: Challenging the dominant medical paradigm. In Needs Assessment and Community Care: Clinical Practice and Policy Making, (ed. Baldwin, S.), pp 186–208. Butterworth-Heinemann: Oxford.Google Scholar