Handbook of User Involvement in Nursing and Healthcare Research

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 involvement in 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 practice 178 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