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/
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.
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
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
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?
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
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)
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.
Research funding
• Research funding bodies increasingly expect
service user involvement; for example:
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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
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
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
• 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.
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/ )
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
Issues and dilemmas
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Lack of guidance or ‘training’
Payment
CRB checks
Representativeness
Peer review
Institutional requirements
Ethical approval
Proposals
Strong feelings and power differentials
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
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
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.pdf the Shaping Our Lives
website, http://www.shapingourlives.org.uk also contains other useful documents