Handbook of Service User Involvement in Nursing and Healthcare Research (eBook)

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

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

"The book is clearly written with pertinent examples drawn
from real life. The index is clear and easy to use."
(Nursing Times, 17 September 2012)