Critical Perspectives on User Involvement
Critical Perspectives on User Involvement
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Abstract
This collection draws together experiences and perspectives on user involvement from user activists, academics and practitioners. It includes chapters that focus on autonomous collective action by disabled people, mental health service users and others; action within the health and social care service delivery system to influence services; and user-led and collaborative research designed to promote ways of understanding the world from service users' perspectives. The book includes examples relating to the involvement of young people, young mothers, older people, people living with cancer and woman with alcohol problems, in addition to the experiences of disabled people and mental health service users. Chapters offer conflicting views, for example on the issue of whether the impacts of involvement can and should be ‘measured’. Some chapters offer a historical perspective, arguing for the need to understand both autonomous action and official involvement as interconnected processes of social change. The book highlights both the official acceptance of user involvement as a mainstream activity and the continuing challenges experienced by those seeking not only to have a voice, but also to achieve recognition for their knowledge and understanding. It concludes with a discussion of the continuing need for ‘critical perspectives’, both in the conduct of user involvement and in analyses of it. The book also argues for the necessity of including different perspectives in this process.
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Front Matter
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Part One Introduction: user movements
Marian Barnes andPhil Cotterell-
One
Survivors History Group takes a critical look at historians
Survivors History Group
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Two
The Nottingham Advocacy Group: a short history
Marian Barnes andColin Gell
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Three
Building solidarity, ensuring diversity: lessons from service users' and disabled people's movements
Peter Beresford andFran Branfield
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Four
Service users and the third sector: opportunities, challenges and potentials in influencing the governance of public services
Graham P. Martin
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Five
The capacity, impact and challenge of service users' experiential knowledge
Phil Cotterell andCarolyn Morris
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Part One: User movements
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One
Survivors History Group takes a critical look at historians
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Part Two User involvement in services
Marian Barnes andPhil Cotterell-
Six
Collaboration in public services: can service users and staff participate together?
Michelle Farr
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Seven
Changing patterns of service user involvement, 1990–2010
Clare Evans andRay Jones
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Eight
Looking out from the middle: influencing policy change through user involvement
Joe Duffy andBrendan McKeever
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Nine
Changing minds: unleashing the potential of mental health service users – a critical perspective on current models of service user involvement and their impact on wellbeing and ‘recovery’
Stephanie McKinley andSarah Yiannoullou
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Ten
Moving forward: understanding the negative experiences and impacts of patient and public involvement in health service planning, development and evaluation
Sophie Staniszewska and others
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Part Two: User involvement in services
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Six
Collaboration in public services: can service users and staff participate together?
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Part Three User involvement in research
Marian Barnes andPhil Cotterell-
Eleven
Young mothers' experiential knowledge and the research process
Geraldine Brady and others
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Twelve
Involving young people in research: making an impact in public health
Louca-Mai Brady and others
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Thirteen
Projects through partnership: promoting participatory values throughout the research process
Robert Kirkwood
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Fourteen
Involving older people in research: empowering engagement?
Lizzie Ward andBeatrice Gahagan
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Fifteen
‘Still out there?’ Is the service user voice becoming lost as user involvement moves into the mental health research mainstream?
Kati Turner andSteve Gillard
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Sixteen
Service user-led research in the NHS: wasting our time?
Patsy Staddon
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Seventeen
Should we? Could we? Measuring involvement
Rachel Purtell and others
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Eighteen
Evaluating the impact of public involvement on research
Rosemary Barber and others
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Part Three: User involvement in research
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Conclusion: Critical and different perspectives on user involvement
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Eleven
Young mothers' experiential knowledge and the research process
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End Matter
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