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

  • Peter Beresford (a1)


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.


Corresponding author

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:


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Barnes, C. (2004). Reflections on doing emancipatory disability research In Disabling Barriers - Enabling Environments (ed Swain, J.. French, S., Barnes, C.. Thomas, C.), pp. 4753. Sage: London.
Barnes, C. & Mercer, G (Ed.) (1997). Doing Disability Research. Disability Press: Leeds.
Beresford, P. (2002). User involvement in research and evaluation: liberation or regulation? Social Policy & Society 1(2) 95105.
Beresford, P. (2003). It's Our Lives: A Short Theory of Knowledge, Distance and Experience. Citizen Press in association with Shaping Our Lives: London.
Beresford, P. & Evans, C. (1999). Research and empowerment. British Journal of Social Work 29. 671677.
Campbell, J. & Oliver, M. (1996). Disability Politics: Understanding Our Past, Changing Our Future. Routledge: London.
Crotty, M. (1998). The foundations of social research. Meaning and perspective. In The Research Process. Sage: London.
DHS (1992). Special Issue: Researching disability. Disability, Handicap and Society 7(2). 99203.
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.
Faulkner, A. & Nicholls, V. (1999). The DIY Guide to Sunivor Research. Mental Health Foundation: London.
Harding, S. (1993). Rethinking standpoint epistemology: What is "Strong objectivity"? In Feminist Epistemologies (ed. Alcoff, C. and Potter, E.), pp. 4982. Routledge: London.
Hunt, P. (1966). A critical condition. In The Disability Reader (ed Shakespeare, T.), pp. 719. Cassell: London and New York.
Hunt, P. (1972). Parasite people. Cheshire Smile Autumn 18(3), 15.
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. 3750.
Lindow, V. (2001). Survivor research. In This Is Madness Too (ed. Newnes, C., Holmes, G. and Dunn, C.), pp. 135146. PCCS Books: Ross on Wye.
Mercer, G. (2002). Emancipatory disability research. In Disability Studies Today (ed. Barnes, C., Oliver, M. and Barton, L.), pp. 228249. Policy: Cambridge.
Miller, E.J. & Gwynne, G.V. (1972). A Life Apart. Tavistock Publications and Lippincott: London.
Nicholls, V. (2001). Doing Research Ourselves. Strategies For Living. Mental Health Foundation: London.
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.
Oliver, M. (1992). Changing the social relations of research production. Disability, Handicap & Society, No 7, 101115.
Oliver, M. (1996). Understanding Disability: From Theory to Practice. Macmillan: Basingstoke.
Reason, J. & P. Rowan, J. (Ed.) (1981). Human Inquiry: A Sourcebook of New Paradigm Research. John Wiley & Sons: Chichestcr.
Rose, D. (2001). Users’ Voices: The Perspectives of Mental Health Service Users on Community and Hospital Care. Sainsbury Centre for Mental Health: London.
Rose, D. (2003). Having a diagnosis is a qualification for the job. British Medical Journal 326, 1331.
SURE (2002). SURE: Service User Research Enterprise, Annual Report, 2001-2002, SURE. Health Service Research. Institute of Psychiatry: London.
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 186208. Butterworth-Heinemann: Oxford.



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