Handbook of Service User Involvement in Nursing and Healthcare Research

Elizabeth Morrow is Research Associate at the National Nursing Research Unit, Kings College LondonDr Annette Boaz is Lecturer in Translational Research at the Division of Health and Social Care Research, King’s College, LondonSally 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 xPreface xiiStructure of the book xvAcknowledgements xviiiPart I Preparing 11 Perspectives and expectations 3Approaching service user involvement 4Political and research contexts of involvement 7Historical roots and social movements 8Perspectives of service user involvement 12What is known about the impact of involvement? 14Current challenges 152 Concepts 18Service users 19Involvement 21Representation 22Experiential knowledge 24Empowerment 25Participation 26Models of involvement 27A theoretical framework for approaching service user involvement in research 303 Designing involvement 36Deciding who to involve 37Building in opportunities for involvement 40Research methods and approaches to involvement 42Planning involvement 48Payments 48Research ethics and governance 544 Working relationships 59Making connections 60Working environments 61Roles and responsibilities 66Legal and ethical issues 67Training and support 68Communication 70Feedback and reflection 72Embedding service user involvement 72Part II Learning 775 Patients, clients and carers 79Patients who are receiving health care 80People who are very sick 83People with rare clinical conditions 85People who find it difficult to access services 85People who do not have the capacity to consent 87Carers 896 Involvement over the life course 93Children and their parents 93School-age children 97Young people 100Adults 102Older people 1037 Seldom-heard groups 106Involving seldom-heard groups 107People with physical disabilities 108The deaf and people who are hard of hearing 110People who are blind or partially sighted 111People with learning disabilities 111People with degenerative cognitive impairment 113People with mental health problems 113Black and minority ethnic groups 1168 Service user-led research 120Personal health research 121Volunteer networks 121Service user-led organisations 123Charities and not-for-profit organisations 125Experienced service user representatives 127Academic service user researchers 128Part III Evaluating 1339 Quality 135Indicators of successful involvement 136Documenting service user involvement work 137Using reflective techniques 139Reflexivity and service user involvement 142Quality experiences of involvement 143Quality environments for involvement 14610 Impact 151Why we need to know about impact 152Designing an assessment of impact 153Recognising impact 154Recording impact 157Reporting impact 16111 International perspectives 165Europe 166The USA 168Canada 169Australia and New Zealand 170Developing countries 17212 Conclusion 176Summary conclusions 177Service user involvement enhancing evidence-based practice 178Enriching professional education 179Teaching service user involvement in research 180Developing professional roles 184Securing service user’s commitment to involvement 185Further reading 188Web-based resources 189Index 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)