This book fills an important niche in the market providing
practical expert advice on the involvement of service users
— patients, carers and the public — in nursing and
healthcare research. An invaluable guide for anyone working
or involved in nursing and healthcare research, this book provides
a step-by-step guide to the principles and process of involvement,
including understanding the rationale for involvement, designing
involvement, working with service users, and evaluating what has
been achieved.
With illustrations, worked examples and tool sheets throughout,
this evidence-based guide uses real life examples from recent
research studies in health and social care research, thus relating
theory to practice in a meaningful way. The Handbook of Service
User Involvement in Nursing & Healthcare Research
introduces a wide range of key issues, including:
* Why? Why should researchers involve service
users?
* How? How can researchers and service users work
together successfully and productively?
* Who? Who chooses to become involved in research?
How are issues of representation and
diversity addressed?
* When? At what stage should service users be
involved in the research process?
Содержание
Contributors viii
About the authors x
Preface xii
Structure of the book xv
Acknowledgements xviii
Part I Preparing 1
1 Perspectives and expectations 3
Approaching service user involvement 4
Political and research contexts of involvement 7
Historical roots and social movements 8
Perspectives of service user involvement 12
What is known about the impact of involvement? 14
Current challenges 15
2 Concepts 18
Service users 19
Involvement 21
Representation 22
Experiential knowledge 24
Empowerment 25
Participation 26
Models of involvement 27
A theoretical framework for approaching service user involvementin research 30
3 Designing involvement 36
Deciding who to involve 37
Building in opportunities for involvement 40
Research methods and approaches to involvement 42
Planning involvement 48
Payments 48
Research ethics and governance 54
4 Working relationships 59
Making connections 60
Working environments 61
Roles and responsibilities 66
Legal and ethical issues 67
Training and support 68
Communication 70
Feedback and reflection 72
Embedding service user involvement 72
Part II Learning 77
5 Patients, clients and carers 79
Patients who are receiving health care 80
People who are very sick 83
People with rare clinical conditions 85
People who find it difficult to access services 85
People who do not have the capacity to consent 87
Carers 89
6 Involvement over the life course 93
Children and their parents 93
School-age children 97
Young people 100
Adults 102
Older people 103
7 Seldom-heard groups 106
Involving seldom-heard groups 107
People with physical disabilities 108
The deaf and people who are hard of hearing 110
People who are blind or partially sighted 111
People with learning disabilities 111
People with degenerative cognitive impairment 113
People with mental health problems 113
Black and minority ethnic groups 116
8 Service user-led research 120
Personal health research 121
Volunteer networks 121
Service user-led organisations 123
Charities and not-for-profit organisations 125
Experienced service user representatives 127
Academic service user researchers 128
Part III Evaluating 133
9 Quality 135
Indicators of successful involvement 136
Documenting service user involvement work 137
Using reflective techniques 139
Reflexivity and service user involvement 142
Quality experiences of involvement 143
Quality environments for involvement 146
10 Impact 151
Why we need to know about impact 152
Designing an assessment of impact 153
Recognising impact 154
Recording impact 157
Reporting impact 161
11 International perspectives 165
Europe 166
The USA 168
Canada 169
Australia and New Zealand 170
Developing countries 172
12 Conclusion 176
Summary conclusions 177
Service user involvement enhancing evidence-based practice178
Enriching professional education 179
Teaching service user involvement in research 180
Developing professional roles 184
Securing service user’s commitment to involvement 185
Further reading 188
Web-based resources 189
Index 191
Об авторе
Elizabeth Morrow is Research Associate at the National Nursing Research Unit, Kings College London
Dr Annette Boaz is Lecturer in Translational Research at the Division of Health and Social Care Research, King’s College, London
Sally Brearley is Chair of Health Link, (a not-for-profit organisation aimed at strengthening public influence on health (www.health-link, org.uk), and was former Chair of The Patients Forum (www.thepatientsforum.org.uk)
Professor Fiona Mary Ross is Dean of Faculty of Health and Social Care Sciences, Kingston University and St George’s, University of London
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