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User-focussed research. Dr. Jan Wallcraft Fellow for Experts by Experience - NIMHE Senior Researcher - User Focussed Research - SCMH. New paradigms in research. Focus on issues of concern to oppressed and marginalised groups Use naturalistic methods instead of laboratory methods
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User-focussed research Dr. Jan Wallcraft Fellow for Experts by Experience - NIMHE Senior Researcher - User Focussed Research - SCMH
New paradigms in research • Focus on issues of concern to oppressed and marginalised groups • Use naturalistic methods instead of laboratory methods • Aim for honesty about research objectives and the effects of research on participants • Aim to be respectful, non-exploitative and to give something back to communities
New paradigms (2) • Make a commitment to empowerment and justice • Often research‘with’ instead of ‘on’ people • Adopt collaborative and/or action research approaches • Often share research skills with oppressed groups, e.g. by offering training.
User led research - how it came about • Knowledge is power - personal empowerment through research • Researchers have mental health problems too • Local user groups doing surveys • Voluntary sector organisations supporting user-led projects • Collaboration between academics and service users
SCMH User focussed monitoring Users’ Voices In Our Experience MHF Strategies for Living S4L main report Healing Minds Doing Research Ourselves project Anglia Polytechnic University/Colchester Mind - Personality Disorder research Service User Research Enterprise (SURE) at the Institute of Psychiatry On Our Own Terms at SCMH Examples of user-led research
On Our Own Terms: a study of the service user/survivor movement in mental health. Jan Wallcraft with Jim Read and Angela Sweeney, Sainsbury Centre for Mental Health 2003
Key objectives • To find out the extent and scope of the service user/survivor movement in England, and make this knowledge available to user groups and to decision-makers and practitioners • To research the current state of play in user involvement and make recommendations for improving practice.
Methods • Project steering group of service users including a number of Black service users • Project staff and research team all service users • Mapping user movement and postal survey of 315 groups • In-depth study with 25 groups, 30 movement leaders, and observations of user involvement in 8 local planning teams.
Key Findings • Service user groups form an identifiable movement with common issues • The movement provides mutual support, combats stigma, aids recovery and inclusion • User involvement is an important activity but is secondary to mutual support function • Black people are currently marginalised in the movement and need their own networks
Implications of the study • Naming the movement and feeding this back could raise awareness and help growth • This is a ‘warts and all’ honest appraisal of the movement’s faults as well as its successes - may help overcome racism and other problems • Policy makers may find it easier to provide the right kinds of support for involvement
Where to from here? Shifting the psychiatric discourse • Writing about the existence of a phenomenon is a way to make it more concrete (see Foucault’s ‘Archaeology’) • The discourse of psychopathology has had many millions of words and ££££ spent on research to ‘prove’ its existence • We still have a long way to go!!!!!!!!!!!
References (1) • Foucault, M. (1971) Madness and Civilisation, London: Routledge. • Foucault M(1972) Archaeology of Knowledge, London: Routledge. • Guba, E.G. and Lincoln, Y.S. (1985) Naturalistic Inquiry, London: Sage. • Wallcraft J. (1998) Survivor-led research in human services: challenging the dominant medical paradigm, in: Needs Assessment and Community Care, ed Steve Baldwin, Butterworth Heinemann. • Wallcraft J. and Michaelson J. (2001) Developing a Survivor Discourse to Replace the Psychopathology of Breakdown and Crisis, Journal of Critical Psychology, Counselling and Psychotherapy, Vol 1 no.4 Winter 2001 pp 254-277 • Wallcraft, Read and Sweeney (2003) On Our Own Terms, SCMH • SCMH (2003) Mental Health Service User and Survivor Movement Policy Paper
References (2) • Rose et al (1998) In Our Experience, SCMH • Rose D. (2001) Users’ Voices, SCMH Mental Health Foundation (1997) Knowing Our Own Minds, MHF • Wallcraft J. (1998) Healing Minds, MHF • Mental Health Foundation Mental Health Foundation (2000) Strategies for Living: A report of user-led research into people’s strategies for living with mental distress, London: MHF. • Nicholls V. (2001) Doing Research Ourselves, MHF. • Bobat H. (2001) A User-Led Research Project into Mosque, MHF • Matthew S. (2001) Research Project into User Groups and Empowerment, MHF.