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The role and working of reference, or advisory, groups involving disabled people: reviewing the experiences and implications of three contrasting research projects

The role and working of reference, or advisory, groups involving disabled people: reviewing the experiences and implications of three contrasting research projects
The role and working of reference, or advisory, groups involving disabled people: reviewing the experiences and implications of three contrasting research projects
Increasingly in recent years, the involvement of disabled people as co-researchers has been regarded as ‘good practice’. This has been informed by growing participatory and emancipatory research paradigms as well as user focused policy imperatives. The benefits of these shifts apply to the research itself (improved definition, direction, applicability and impact), to non-disabled researchers(personal growth and enhanced understanding of the reflexive research process), to people with disabilities involved as researchers or collaborators (personal growth and enhanced opportunities), and (if externally funded) to the funder whose ways of operating are likely to be challenged profoundly. In this paper, Ann Lewis, Sarah Parsons and Christopher Robertson (based at the University of Birmingham), Anthony Feiler, Beth Tarleton and Debby Watson (based at the University of Bristol) and Richard Byers, Jill Davies, Ann Fergusson and Claire Marvin (based at the University of Cambridge) discuss the work of three independent research teams carrying out concurrent projects. The authors share their experiences of trying to take seriously the participation of disabled people in research. All three projects were informed, to a significant degree, by their respective reference groups of disabled people. The work of these groups in each of the three projects is outlined and then discussed in relation to five common themes: formal contracts with members of reference groups; considerations concerning drawing on an established reference group; planning for reference group involvement; style of reference group involvement; and building on good practice.
reference group, advisory group, disabilities, participatory, emancipatory, partnership, research, empowerment, ethics
1467-8578
78-84
Lewis, Ann
50911ac4-d480-4488-b745-1c405180d3bb
Parsons, Sarah
5af3382f-cda3-489c-a336-9604f3c04d7d
Robertson, Christopher
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Feiler, Anthony
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Tarleton, Beth
d194b011-e7b4-4978-a5e1-3ace20f89bf0
Watson, Debby
5d5ac69c-9af7-44e4-8790-7d0cc35b86cd
Byers, Richard
ee8ae0a6-249b-48f3-ba66-af82ae78f80c
Davies, Jill
d218077d-c713-410d-a55e-4b0de719f67e
Fergusson, Ann
fe87d5fd-6774-47a8-b99d-ab1913dfe9ff
Marvin, Claire
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Lewis, Ann
50911ac4-d480-4488-b745-1c405180d3bb
Parsons, Sarah
5af3382f-cda3-489c-a336-9604f3c04d7d
Robertson, Christopher
3f8b9884-23d1-4b3d-82f3-df037cdb6bb3
Feiler, Anthony
6c522ddd-abf6-4cd4-962d-8262f2ab6fa4
Tarleton, Beth
d194b011-e7b4-4978-a5e1-3ace20f89bf0
Watson, Debby
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Byers, Richard
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Davies, Jill
d218077d-c713-410d-a55e-4b0de719f67e
Fergusson, Ann
fe87d5fd-6774-47a8-b99d-ab1913dfe9ff
Marvin, Claire
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Lewis, Ann, Parsons, Sarah, Robertson, Christopher, Feiler, Anthony, Tarleton, Beth, Watson, Debby, Byers, Richard, Davies, Jill, Fergusson, Ann and Marvin, Claire (2008) The role and working of reference, or advisory, groups involving disabled people: reviewing the experiences and implications of three contrasting research projects. British Journal of Special Education, 35 (2), 78-84. (doi:10.1111/j.1467-8578.2008.00376.x).

Record type: Article

Abstract

Increasingly in recent years, the involvement of disabled people as co-researchers has been regarded as ‘good practice’. This has been informed by growing participatory and emancipatory research paradigms as well as user focused policy imperatives. The benefits of these shifts apply to the research itself (improved definition, direction, applicability and impact), to non-disabled researchers(personal growth and enhanced understanding of the reflexive research process), to people with disabilities involved as researchers or collaborators (personal growth and enhanced opportunities), and (if externally funded) to the funder whose ways of operating are likely to be challenged profoundly. In this paper, Ann Lewis, Sarah Parsons and Christopher Robertson (based at the University of Birmingham), Anthony Feiler, Beth Tarleton and Debby Watson (based at the University of Bristol) and Richard Byers, Jill Davies, Ann Fergusson and Claire Marvin (based at the University of Cambridge) discuss the work of three independent research teams carrying out concurrent projects. The authors share their experiences of trying to take seriously the participation of disabled people in research. All three projects were informed, to a significant degree, by their respective reference groups of disabled people. The work of these groups in each of the three projects is outlined and then discussed in relation to five common themes: formal contracts with members of reference groups; considerations concerning drawing on an established reference group; planning for reference group involvement; style of reference group involvement; and building on good practice.

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Published date: June 2008
Keywords: reference group, advisory group, disabilities, participatory, emancipatory, partnership, research, empowerment, ethics

Identifiers

Local EPrints ID: 170777
URI: https://eprints.soton.ac.uk/id/eprint/170777
ISSN: 1467-8578
PURE UUID: 70851e97-f2f6-45dd-8480-3af2dbbe9106
ORCID for Sarah Parsons: ORCID iD orcid.org/0000-0002-2542-4745

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Date deposited: 11 Jan 2011 09:39
Last modified: 06 Jun 2018 12:32

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Contributors

Author: Ann Lewis
Author: Sarah Parsons ORCID iD
Author: Christopher Robertson
Author: Anthony Feiler
Author: Beth Tarleton
Author: Debby Watson
Author: Richard Byers
Author: Jill Davies
Author: Ann Fergusson
Author: Claire Marvin

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