Users as Researchers Workstation and Showroom, Sheffield Lyngford House Conference Centre, Taunton

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

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ACCESS

• Access isnt just about ramps and buildings,
  its 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.

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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.

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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

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2008

• Researching Together ran for the second time
  without service users but using video clips of
  the previous years 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.

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Let me in Im a researcher!(Learning
Difficulties Research Team and others 2006)
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Let me in Im a researcher!

• Let me in Im 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

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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 were talking with
  academics.
• There is a Glossary of jargon words on page
  113.

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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.

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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
  positivism or the scientific method.
• Positivist researchers believe that it is
  possible to be objective, neutral and value free
  when designing and carrying out research.

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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.

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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.

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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 peoples individual deficit
  towards barriers to disabled peoples inclusion
  in mainstream society.
• In other words, rather than being concerned with
  whats wrong with individual disabled people,
  the social model is concerned with whats wrong
  with the environment or society.

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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 Carrs (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.

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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)

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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.

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Levels of participation

• User-controlled research
• Research Partners
• Consultants or Advisory Group members
• Respondents or interviewees

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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)

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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.u
  k/ )

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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/soc
  ialcare/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.u
  k 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.p
  df
• 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/200
  4/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/Briefing20No
  te20Final.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 Im a Researcher! London, Department of
  Health available from http//195.33.102.76/asse
  tRoot/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/publication
  s/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/Userco
  ntrolledresearch20report.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.sheffield
  carers.org.uk/site/index.php?pagepublications
• 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.