Handbook of User Involvement in Nursing and Healthcare Research by Morrow, Elizabeth, Brearley, Sally, Ross, Fiona Mary, Boaz, Annette -- Read -- Imperial Library of Trantor

Index

Cover Title page Copyright page Dedication Contributors About the authors Preface Structure of the book

Part I Preparing Part II Learning Part III Evaluating

Acknowledgements Part I: Preparing

Chapter 1: Perspectives and expectations

Approaching service user involvement Political and research contexts of involvement Historical roots and social movements Perspectives of service user involvement What is known about the impact of involvement? Current challenges

Chapter 2: Concepts

Service users Involvement Representation Experiential knowledge Empowerment Participation Models of involvement A ladder of participation A theoretical framework for approaching service user involvement in research

Chapter 3: Designing involvement

Deciding who to involve People with direct experience of a health issue Building in opportunities for involvement Research methods and approaches to involvement Planning involvement Payments Costing Research ethics and governance

Chapter 4: Working relationships

Making connections Working environments Roles and responsibilities Legal and ethical issues Training and support Communication Feedback and reflection Embedding service user involvement

Part II: Learning

Chapter 5: Patients, clients and carers

Patients who are receiving health care People who are very sick People with rare clinical conditions People who find it difficult to access services People who do not have the capacity to consent Carers

Chapter 6: Involvement over the life course

Children and their parents School-age children Young people Adults Older people

Chapter 7: Seldom-heard groups

Involving seldom-heard groups People with physical disabilities The deaf and people who are hard of hearing People who are blind or partially sighted People with learning disabilities People with degenerative cognitive impairment People with mental health problems Black and minority ethnic groups

Chapter 8: Service user-led research

Personal health research Volunteer networks Service user-led organisations Charities and not-for-profit organisations Experienced service user representatives Academic service user researchers

Part III: Evaluating

Chapter 9: Quality

Indicators of successful involvement Documenting service user involvement work Using reflective techniques Reflexivity and service user involvement Quality experiences of involvement Quality environments for involvement

Chapter 10: Impact

Why we need to know about impact Designing an assessment of impact Recognising impact Recording impact Reporting impact

Chapter 11: International perspectives

Europe The USA Canada Australia and New Zealand Developing countries

Chapter 12: Conclusion

Summary conclusions Service user involvement enhancing evidence-based practice Enriching professional education Teaching service user involvement in research Developing professional roles Securing service user’s commitment to involvement Further reading Web-based resources

Index