Critical perspectives on user involvement

✍ Scribed by Marian Barnes (editor); Phil Cotterell (editor)

• Publisher: Policy Press
• Year: 2011
• Tongue: English
• Leaves: 297
• Category: Library

✦ Synopsis

Drawing on contributions from user activists and academic researchers, this topical reader provides a critical stock take of the state of user involvement. It considers different contexts in which such involvement is taking place and includes diverse and sometimes conflicting perspectives on the issues involved. This original and insightful critique will be an important resource for students studying health and social care and social work, researchers and user activists.

✦ Table of Contents

CRITICAL PERSPECTIVES ON USER INVOLVEMENT
Contents
Notes on contributors
Introduction: From margin to mainstream
Involving users, patients and the public
User movements and patient organisations
Which identity?
Conclusion
Part 1: Introduction: user movements
1. Survivors History Group takes a critical look at historians
Introduction
Peter Sedgwick
Anne Rogers and David Pilgrim
Nick Crossley
Marian Barnes and Ric Bowl
Jan Wallcraft, Jim Read and Angela Sweeney
Helen Spandler
Survivors History Group
Collective authorship
2. The Nottingham Advocacy Group: a short history
Origins and early years
Becoming established
Facing challenges
Into the new millennium
Individual stories of NAG
NAG, the user movement and mental health services
Conclusion
3. Building solidarity, ensuring diversity: lessons from service users’ and disabled people’s movements
Introduction
The broader political and ideological context
The Identification of new difficulties
The emergence of user movements
An isolating and segregated past
The need for inclusion
Shaping Our Lives
Conclusion
4. Service users and the third sector: opportunities, challenges and potentials in influencing the governance of public services
Introduction
The rise to influence of the third sector1
The challenges of multiple roles
Consequences for effective user involvement and advocacy
Implications for influence
Concluding remarks
5. The capacity, impact and challenge of service users’ experiential knowledge
Introduction
Key knowledge claims
Experiential knowledge in the setting of cancer care
Conclusion
Part 1: User movements
Questions for reflection
Part 2: User involvement in services
Introduction
6. Collaboration in public services: can service users and staff participate together?
Introduction
Co-design and co-production: definitions and processes
Service user involvement
Staff involvement
Involving staff and service users together
Research and case studies
Benefits and challenges
Challenges
Institutional context
Conclusions
7. Changing patterns of service user involvement, 1990-2010
Service users and social services education and training
Service users and quality standards and assessment
User-controlled research
Service users and direct payments
Service users and service user controlled services
Service users and councillors
Speaking out about cuts
Service users, community development and competitive tendering
Service users and Centres for Independent Living
8. Looking out from the middle: influencing policy change through user involvement
Background
Introduction
Service users, carers and academics as co-researchers: the challenges and opportunities
Addressing scepticism, tokenism and consultation fatigue
Doing the research
How not to engage
Concluding thoughts
9. 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’
The Changing Minds programme
Expectations and outcomes
10. Moving forward: understanding the negative experiences and impacts of patient and public involvement in health service planning, development and evaluation
Introduction
PPI impact on NHS staff
PPI impact on service users
PPI impact on the community
Summary
The nature of negative impact
Conclusion
Part 2: User involvement in services
Questions for reflection
Part 3: User involvement in research
Introduction
11. Young mothers’ experiential knowledge and the research process
Introduction
Teenage pregnancy: policy context
Inclusion and involvement of young mothers
Research approach
Issues and challenges: participatory methods and service user involvement
Group identity, individual experience
Political drivers towards inclusion of service users
Lessons learnt
12. Involving young people in research: making an impact in public health
Introduction
Children and young people’s participation
Involving children in research
The PEAR project – involving young people in public health
Children and young people’s involvement in research – making an impact
What makes involvement meaningful?
13. Projects through partnership: promoting participatory values throughout the research process
Introduction
Project inception
Occupational therapy as participatory practice
Setting the scene
The first project community: young people from mainstream schools
The second project community: a school for Deaf children
Existing tensions
The role of facilitator
Conclusion
14. Involving older people in research: empowering engagement?
Introduction
Developing research relationships
The evolving process of how we involved older people
Who got involved … older people bringing more than just themselves
The unfolding challenges
Conclusion
15. ‘Still out there?’ Is the service user voice becoming lost as user involvement moves into the mental health research mainstream?
Background
Who we are
Aim
Kati – the service user researcher’s account
Steve – the university researcher’s account
Discussion
16. Service user-led research in the NHS: wasting our time?
Introduction
Initial involvement and setting the agenda
Findings
Risks and rewards
Wasting our time?
17. Should we? Could we? Measuring involvement
Introduction
Defining involvement
The purpose of involvement
Involvement in practice
Issues of guidance and practice
What part of involvement is to be measured?
Conclusion
18. Evaluating the impact of public involvement on research
Introduction
A brief summary of the impact of public involvement
Challenges to evaluating the impact of public involvement
Part 3: User involvement in research
Questions for reflection
Conclusion: Critical and different perspectives on user involvement
Marian
Phil
What are ‘critical perspectives’?
Conclusion
References
INDEX