What is participatory research with service users?

1. What is participatory research with service users? Kathy Boxall, University of Sheffield, kathy.boxall@sheffield.ac.uk Peter Beresford, Brunel University, peter.beresford@brunel.ac.uk ESRC Research Methods Festival 2008 Pictures from CHANGE Picture Bank http://www.changepeople.co.uk/

2. What is participatory research with service users? This session will examine participatory approaches where ‘the researched’ are actively involved in research design and/or process. It will explore current requirements for service user involvement, different levels of participation and the impact of user involvement in research. Practical starting points will be discussed as well as some of the issues and dilemmas which can arise when working in this way.

3. What is participatory research with service users? • What do ‘we’ mean by ‘service users’? • Requirements for user involvement in research • Levels of participation • Starting points and practicalities • Impact

4. What do 'we' mean by 'service users'? • People who ‘use’ or ‘receive’ health or social care services • Some mental health system survivors refer to themselves as ‘service refusers’, rather than service users • Many disabled people and older people have been ‘refused’ services because of changes to eligibility criteria • Members of supposedly ‘hard to reach’ minority ethnic communities have redefined themselves as service providers rather than service users (Chau 2007) • The term ‘service user’ is however often used to refer to all of the above

5. Who decides? • Most of us are users of health (and other) services • Some service users object to this broader definition (Beresford 2005) • Who decides who is a service user? • Social care professionals? • Researchers? • Self-definition?

6. Discrete groups • Historically, much of the research literature has presumed two discrete groups: – ‘academics/researchers’ – ‘service users’ • Little expectation that service users will be researchers themselves or that they (or their families) will access academic literature • Changing as a result of Widening Participation

7. Why involve service users? • In the social care sector, there have been clear policy directives for the involvement of service users for a number of years: • the 1989 Children Act and 1990 NHS and Community Care Act require local authorities to consult with service users • requirements for service user and carer participation under ‘Best Value’, ‘Supporting People’ and other legislation and guidance • Similar developments within the NHS: • In 1996 the government set up and funded Consumers in NHS Research to advise on how best to involve members of the public in research • This has since been re-named INVOLVE and now includes social care and public health as well as NHS research (www.invo.org.uk)

8. Recent developments • The Research Governance Framework for Health and Social Care (DH 2005, p8) states: Relevant service users and carers or their representative groups should be involved wherever possible in the design, conduct, analysis and reporting of research. • The Local Government and Public Involvement in Health Act 2007 and the Local Involvement Networks Regulations 2008 set out new requirements for patient and public involvement in health and social care • Clear commitment – in principle at least – to service user involvement in health and social care research, policy and practice.

9. Research funding • Research funding bodies increasingly expect service user involvement; for example: • Joseph Rowntree Foundation • Department of Health • Social Care Institute for Excellence (SCIE) • Big Lottery Fund • ESRC • Some funders also involve service users in peer review processes

10. Participatory research with service users • Generally understood as research ‘with’ rather than ‘on’ service users • Service users may be involved in one or more of the following stages: • research design, including proposals • implementation and data collection • data analysis • dissemination

11. Levels of participation • User-controlled research • Research ‘Partners’ • Consultants or Advisory Group members • Respondents or interviewees

12. User-controlled research • User-researchers • All stages of the research are controlled by service users from the outset (Hanley 2005) • Clear influences from emancipatory disability research and the social model of disability (Oliver 1992; Mercer 2002; Barnes 2003)

13. The social model of disability • The social model of disability diverts attention away from ‘individual deficit’ towards external barriers (Oliver 1990) • Research based on a social model understanding of disability takes as its focus the barriers experienced by people with impairments – these barriers may be physical, economic, social etc. • Sarah Carr’s (2004) review of service user participation in social care services points to the wider influence of the social model amongst service user groups more generally

14. Understandings and questions Research based on an individual deficit understanding of disability will frame interview questions accordingly: • What complaint causes you difficulty in holding, gripping or turning things? This can be reframed from a social model perspective: • What defects in the design of everyday equipment like jars, bottles and lids causes you difficulty in holding, gripping or turning them?

15. Similarly: • Do you have a scar, blemish, or deformity which limits your daily activities? Can be re-framed as: • Do other people's reactions to any scar, blemish or deformity you may have, limit your daily activities? (Oliver 1990)

16. Emancipatory disability research • Social model understanding of disability • Controlled by disabled people • Potential to improve the lives of disabled people(Barnes 2003) • However some service users may not welcome control of the research process; they may prefer to participate in research where control (and work!) is shared and negotiated.

17. Research ‘Partners’ • Participatory or ‘partnership’ approaches to service user involvement: • draw on discussions of emancipatory disability research as well as other work on participatory methodologies (for example, Reason and Bradbury 2001); • provide opportunities for service users who may not welcome control or responsibility but nevertheless wish to contribute to research; • offer possibilities for service user researchers and university researchers to learn – from each other – about how to do research together (see: http://partnership.education.manchester.ac.uk/ )

18. Starting points • Literature on social model of disability, emancipatory research and user involvement more generally • Approach existing service user or carer groups • Respect for service users’ expertise and acknowledgement that we can all learn from each other • Communication and terminology • Payment • Fun • Feedback to service users

19. Issues and dilemmas • Lack of guidance or ‘training’ • Payment • CRB checks • Representativeness • Peer review • Institutional requirements • Ethical approval • Proposals • Strong feelings and power differentials

20. IMPACT • Growing interest in the impact of user involvement in research and evaluation. • Has grown out of a concern to determine what value, if any, service user involvement can add to traditional approaches. • early work • emerging evidence • outcomes for measurement

21. Suggested Reading Barnes, C. (2003) What a Difference a Decade Makes: reflections on doing ‘emancipatory’ disability research, Disability & Society, Vol. 18, No. 1, pp3-17 http://www.tandf.co.uk/journals/titles/09687599.asp Beresford, P. (2002) User involvement in research and evaluation: liberation or regulation?, Social Policy and Society, 1(2), pp95-106 http://journals.cambridge.org/action/displayJournal?jid=SPS Beresford, P. (2003), It’s Our Lives: A short theory of knowledge, distance and experience, London, Citizen Press in association with Shaping Our Lives. Beresford, P. (2005), ‘Service User’: Regressive or liberatory terminology?, Current Issues, Disability & Society, Vol 20, No. 4, pp469-477, http://www.tandf.co.uk/journals/titles/09687599.asp. Boxall, K. Carson, I. and Docherty, D. (2004) Room at the Academy? People with Learning Difficulties and Higher Education, Disability and Society, Vol.19, No.2, pp99-112. Boxall, K., Warren, L., Chau, R. (2007) User Involvement, in Hodgson, S. and Irving, Z. (eds) Policy Reconsidered: Meanings, politics and practices, Bristol, Policy Press, pp155-172. Branfield, F., Beresford, P. with contributions from others (2006) Making User Involvement Work: Supporting Service User Networking and Knowledge, York, Joseph Rowntree Foundation – available from: http://www.jrf.org.uk/knowledge/findings/socialcare/1966.asp Campbell, J. & Oliver, M. (1996) Disability Politics: Understanding our past, changing our future, London, Routledge. Campbell, P. (2005) From Little Acorns – the mental health service user movement, in Bell, A. & Lindley, P. (eds) (2005) Beyond the Water Towers: The unfinished revolution in mental health services 1985-2005, London, Sainsbury Centre for Mental Health. Carr, S. (2004) Has service user participation made a difference to social care services?, London, Social Care Institute for Excellence, http://www.scie.org.uk/publications/positionpapers/pp03.pdf, the SCIE website, http://www.scie.org.uk also contains other useful documents. Chau, R. (2007) The Involvement of Chinese Older People in Policy and Practice: Aspirations and Expectations, York, Joseph Rowntree Foundation http://www.jrf.org.uk/bookshop/eBooks/1952-chinese-older-people.pdf DH (2005) Research Governance Framework for Health and Social Care (2nd Edition), London, Department of Health – available from: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4008777 Faulkner, A. (2004) The ethics of survivor research: Guidelines for the ethical conduct of research carried out by mental health service users and survivors, Bristol, Policy Press http://www.jrf.org.uk/bookshop/details.asp?pubID=639 Hanley, B. (2005) Research as empowerment? Report of a series of seminars organised by the Toronto Group, York, Joseph Rowntree Foundation, http://www.jrf.org.uk/bookshop/eBooks/1859353185.pdf

22. Suggested Reading (contd.) Hubbard, G., Wilkinson, H. and Petch, A. (2004) Users or Losers: Does the rhetoric of user involvement deliver? Research, Policy and Planning, 22(1), pp55-6 http://www.ssrg.org.uk/publications/rpp/2004/issue1/researchoverview.pdf Lowes, L. and Hulatt, I. (eds), (2005),  Involving Service Users In Health And Social Care Research, London, Routledge Mercer, G. (2002) Emancipatory Disability Research, in Barnes, C., Oliver, M. & Barton, L. (Eds) Disability Studies Today, Cambridge, Polity. Nolan, M., Hanson, E., Grant, G. and Keady, J. (Eds) (2007) User Participation in Health and Social Care Research: Voices, values and evaluation, Maidenhead, Open University Press. Office for Public Management (2007) Involvement for Real Equality: The benefits for public services of involving disabled people, Office for Public Management, London http://www.dotheduty.org/files/Involvementforrealequality.pdf Oliver, M. (1990) The Politics of Disablement, Basingstoke, Macmillan. Oliver, M. (1992) Changing the Social Relations of Research Production, Disability, Handicap & Society, Vol. 7, No. 2, pp101-114 – it is worth looking at the whole of this issue which is available electronically (journal has been re-named Disability & Society, http://www.tandf.co.uk/journals/titles/09687599.asp ) Oliver, M. (2004) If I had a Hammer: The Social Model in Action, in Swain, J., Barnes, C., French, S. and Thomas, C. (Eds) (2004) Disabling Barriers - Enabling Environments (2nd edition), London, Sage, pp7-12. Reason, P. and Bradbury, H. (2001) Handbook of Action Research: Participative Inquiry and Practice, Londong, Sage. Steel, R. (Ed) (2004) Involving the Public in NHS, Public Health, and Social Care Research: Briefing Notes for Researchers, Eastleigh, Involve, http://www.invo.org.uk/pdfs/Briefing%20Note%20Final.dat.pdf , the INVOLVE website http://www.invo.org.uk/ also contains many other useful documents Turner, M. and Beresford, P. (2005) Contributing on Equal Terms: Service user involvement and the benefits system, London, Social Care Institute for Excellence, http://www.scie.org.uk/publications/reports/report08.pdf Turner, M. and Beresford, P. (2005) User Controlled Research: Its meanings and potential, Shaping Our Lives and the Centre for Citizen Participation, Brunel University, http://www.shapingourlives.org.uk/downloads/publications/usercontrolledresearch.pdfthe Shaping Our Lives website, http://www.shapingourlives.org.uk also contains other useful documents