Why work in partnership? Kathy Boxall kathy.boxall@sheffield.ac.uk Pictures from: Access2Pictures CD www.peoplefirstltd.com Change Picture Bank CD http://www.changepeople.co.uk

Why work in partnership? Policy Funding Service user organisations Levels of participation ‘Privileged’ knowledge?

Policy 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

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 Other groups have been involved and included in health care research

Service user organisations Organisations of service users are also increasingly campaigning for research to be undertaken ‘with’ rather than ‘on’ service users (Hanley 2005, Turner and Beresford 2005) A number of organisations are supporting and promoting such involvement - for example: Shaping Our Lives http://www.shapingourlives.org.uk INVOLVE http://www.invo.org.uk

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

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)

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

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?

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)

Emancipatory disability research Social model understanding of disability Potential to improve the lives of disabled people Controlled by 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.

Control or partnership Emancipatory research emphasises control of the research by disabled people - “researchers have to learn how to put their knowledge and skills at the disposal of their research subjects, for them to use in whatever ways they choose” (Oliver 1992, p111). The partnership approach we have adopted involves shared control and decision making and the acknowledgement that we all have much to learn from each other.

Privileged vantage points? Standpoint theorists argue that less powerful members of society have a more complete view of the world than dominant groups This is because the less powerful members of society can see both their own perspectives – and the dominant groups’ perspectives (Harding 2004) So, can service users claim a privileged vantage point for knowledge claims? Do they ‘know’ things that people who have not been service users cannot know?

Privileged knowledge? Where research is concerned with uncovering or representing the perspectives of service users, the involvement of service users themselves may be particularly helpful But it is important to acknowledge that dominant service user perspectives may not be shared by all service users There is also a problem with claiming knowledge which can only be known by service users, since the value of such knowledge is limited if it cannot be communicated to, or known, by others

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.

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/

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 Harding, S. (2004) (Ed) The Feminist Standpoint Theory Reader: Intellectual and political controversies, London, Routledge. 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