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

2. Participatory Research with Service UsersKathy Boxall, University of Sheffield 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 in research and consider different levels of participation. Practical starting points will be discussed as well as some of the issues and dilemmas which can arise when workingin 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

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 have also been ‘refused’ services because of changes to eligibility criteria • 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 research? • There are clear policy directives to involve social care service users: • 1990 NHS and Community Care Act requires local authorities to consult with service users • Later requirements for service user and carer participation under ‘Best Value’, ‘Supporting People’ and other legislation • Similar requirements within the health sector

8. Research funding • Research funding bodies increasingly expect service user involvement • The following organisations make reference to this in recent calls for proposals: • Joseph Rowntree Foundation • Department of Health • Social Care Institute for Excellence (SCIE) • Big Lottery Fund • ESRC • Some funders are involving service users in processes of peer review

9. 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

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

11. 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)

12. 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

13. 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?

14. 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)

15. 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.

16. Partnership Research: Negotiating user involvement in research design • We view Partnership Research – carried out ‘with’, rather than ‘on’ service users – as one of a range of complementary approaches which help provide a more complete picture of service users’ experiences, ways of knowing and perspectives.

17. Partnership Research 1.  The aim is for all ‘partners’ to be actively involved throughout the research process participating in all stages of the work. 2. We want to acknowledge that different 'partners' bring different things to the research; we can benefit and learn from each other’s strengths and experiences. 3. Research methods and 'outputs' may be different from 'traditional' research in acknowledgement of the needs and interests of research participants.

18. Partnership Research: Negotiating User-involvement in Research DesignResidential workshops for academics, practitioners and people with learning difficulties to learn from each other about how to do research together.

19. Partnership Research website • Background information on a ‘Partnership Research’ project in ‘Bankside Hostel’ • Material on different forms of data gathering and analysis • ‘Easy’ versions of documents http://partnership.education.manchester.ac.uk/

20. 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

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

22. 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. (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. • 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. • 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 • Lowes, L. and Hulatt, I. (2005) Involving Service Users in Health and Social Care Research, Abingdon, Routledge. • Mercer, G. (2002) Emancipatory Disability Research, in Barnes, C., Oliver, M. & Barton, L. (Eds) Disability Studies Today, Cambridge, Polity. • 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 now been re-named Disability & Society, http://www.tandf.co.uk/journals/titles/09687599.asp ) • 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/Usercontrolledresearch%20report.pdf, the Shaping Our Lives website, http://www.shapingourlives.org.uk also contains other useful documents