Kathy Boxall Daniel Heffernan and Kathryn Littlewood University of Sheffield

1. Users as Researchers?Workstation and Showroom, SheffieldLyngford House Conference Centre, Taunton Kathy Boxall Daniel Heffernan and Kathryn Littlewood University of Sheffield

2. Users as Researchers? • What does access mean to you? • Why involve service users? • The story of the Researching Together course • Professor X and the Slow Shoppers • Theoretical perspectives • Building confidence and skills • Reading list

3. ACCESS Access isn’t just about ramps and buildings, it’s about communication too. What does access mean to you?

4. 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 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) • Local Government and Public Involvement in Health Act 2007 and Local Involvement Networks Regulations 2008 set out new requirements for patient and public involvement in health and social care • Research funders sometimes require evidence of user involvement before they will agree to fund research and some also involve service users in peer review of proposals.

5. The Researching Together course • A seven week short course embedded in a longer final year undergraduate social policy module; • The aim was to provide opportunities for university students, service users and tutors to learn – from each other – about how to do research together; • Service users, students and tutors were involved in a range of classroom exercises which, rather than prioritising knowledge from research or academic publications, drew upon the experiences of those present in the classroom.

6. 2007 • Researching Together ran for the first time – equal numbers of ‘long course’ students and ‘short course’ students attended 6 teaching sessions and a presentation session • First evaluation

7. 2008 • Researching Together ran for the second time – withoutservice users but using video clips of the previous year’s classes • Second Evaluation

8. Course reading • The Researching Together course had to be accessible to both long course and short course students; • We needed therefore to choose reading materials which were accessible to all; • Short course students did not have access to the university library.

9. Let me in – I’m a researcher!(Learning Difficulties Research Team and others 2006)

10. Let me in – I’m a researcher! • Let me in – I’m a researcher! was one of the 13 projects funded by the Department of Health from June 2003 to May 2005. • The project was managed by people with learning difficulties who also did the research. • The report is written in Plain English and is in large print with pictures

11. Jargon words • ‘… we have sometimes used jargon words that researchers in universities know about. We have learnt what these words mean and, as researchers, we can use them when we’re talking with academics.’ • ‘There is a Glossary of jargon words on page 113.’

12. Professor X and the Slow Shoppers • How could this research be done differently? • We used Forum Theatre (Augusto Boal) as a way of involving everyone in research design.

13. Epistemology • Epistemology is about ‘ways of knowing’; how we know and also who can know. • Some people argue that there is only one ‘true’ way of knowing. This way of knowing is called positivismor the scientific method. • Positivist researchers believe that it is possible to be objective, neutral and value free when designing and carrying out research.

14. Epistemologies • Feminist researchers and disabled researchers have challenged positivism and have argued that different people have different experiences and therefore know things from different perspectives. • If you have experienced giving birth to a child, you have a different kind of knowledge about childbirth than someone who has never given birth to a child. • Similarly, if you are a service user you may have a different kind of knowledge to people who have not had the same experiences as you – you may have a different way of knowing the world.

15. Why involve service users in research? • Sandra Harding says that dominant groups are ‘epistemologically disadvantaged’ when trying to research non-dominant groups and their experiences. • This is because members of non-dominant groups are aware of both their own understandings of their lives and situation as well as the dominant group(s) understandings. • They are therefore better placed, she argues, to generate critical questions from their standpoint.

16. The social model of disability • Disabled activists and academics (eg Oliver 1990) have developed the social model of disability. • The social model of disability diverts attention away from disabled people’s ‘individual deficit’ towards barriers to disabled people’s inclusion in mainstream society. • In other words, rather than being concerned with what’s ‘wrong’ with individual disabled people, the social model is concerned with what’s ‘wrong’ with the environment or society.

17. The social model of disability and research • Research based on a social model understanding of disability takes as its focus the barriers experienced by disabled people – 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.

18. 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?

19. 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)

20. 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.

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

22. 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)

23. 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. (see: http://partnership.education.manchester.ac.uk/ )

24. Reading Babbage, F. (2004) Augusto Boal, London, Routledge. Boxall, K., Carson, I. and Docherty, D. (2004) Room at the academy? People with learning difficulties and higher education, Disability and Society, 19 (2): 99-112. Boxall, K., Warren, L. and Chau, R. (2007) User Involvement, in Susan M. Hodgson and Zoë Irving (Eds) Policy Reconsidered: Meanings, Politics and Practices, Bristol, The Policy Press. 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 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 Harding, S. (1993) Rethinking Standpoint Epistemology: ‘What Is Strong Objectivity’?, in Alcoff, L. and Potter, E. (Eds) Feminist Epistemologies, London, Routledge, pp49-82. Hubbard, G., Wilkinson, H., Petch, A. (2004) Research overview: users or losers: does the rhetoric of user involvement deliver?, Research, Policy and Planning, 22(1), pp53-6 – available from: http://www.ssrg.org.uk/publications/rpp/2004/issue1/researchoverview.pdf Oldman, C. (2002) ‘Later life and the social model of disability: a comfortable partnership?, Ageing and Society 22(6), 791-806. OPM (2007) Involvement for Real Equality: The benefits for public services of involving disabled people, London, Office for Public Management - available from: http://www.dotheduty.org/files/Involvementforrealequality.pdf 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 Swain, J., French, S. Barnes, C. and Thomas, C. (Eds) (2004) Disabling Barriers – Enabling Environments, London, SAGE. The Learning Difficulties Research Team, Catherine Bewley and Linsay McCulloch (2006) Let Me In – I’m a Researcher! London, Department of Health – available from: http://195.33.102.76/assetRoot/04/13/29/79/04132979.pdf 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. Warren, L. (2007) Carers Having a Say. Sheffield: Department of Sociological Studies, University of Sheffield and Princess Royal Trust Sheffield Carers Centre – available at: http://www.sheffieldcarers.org.uk/site/index.php?page=publications Warren, L. and Boxall, K. (2009) Service Users In and Out of the Academy: Collusion in Exclusion?, Social Work Education, Vol.28, No.3, pp281-297.