Service user involvement in research can range from the extremes of being the subject, to being the initiator or investigator, of a research study. The activity of the professional researcher can also range from being the person undertaking the research, to being a partner with, or mentor to, service users. This broad scope of levels of involvement is reflected in the contributions in this book, both in the research experiences reported and in the writing of the chapters themselves.
With contributions coming from a range of service areas including learning disabilities, cancer care, older people and mental illness, chapters look at important research issues such as:
- strategies for working in true partnership
- avoiding ‘tokenism’
- involving service users at all stages of the research process
- communication and terminology
- involving service users of different ages and experience
- training needs of professionals and service users
- problems surrounding ‘payment’ for service users
- other ethical and practical issues.
This book is invaluable reading for researchers in health and social care from academic, professional and service user backgrounds.
Table of Contents
Foreword Introduction 1. Theory and practice of user involvement in research: making the connection with public policy and practice Peter Beresford 2. Actively involving marginalized and vulnerable people in research Roger Steel 3. Supporting people with learning difficulties to do their own research Val Williams and Mouse England 4. A hard fight: the involvement of mental health service users in research A User Focus Monitoring Group 5. Translating health policy into research practice Paula Hodgson and Krysia Canvin 6. Foster carers undertake research into birth family contact: using the social action research approach Jennie Fleming 7. From recruitment to dissemination: the experience of working together from service user and professional perspectives Marion Clark, Helen Lester and Jon Glasby 8. Consumer-led research? Parents as researchers: the child health surveillance project Brenda Roche, Philippa Savile, Daphine Aikins and Amy Scammell 9. Consumer involvement in cancer research in the United Kingdom: the benefits and challenges Tony Stevens and David Wilde with David Kirby, Derek Stewart, Dawn Wragg, Sam Ahmedzai, David Cunningham and Janet Darbyshire 10. Community action to housing and health research Meryl Basham, Diane Stockton and Michelle Lake 11. Helping older people to share the research journey Mary Leamy 12. Really making it happen in Wiltshire: the experience of service users evaluating social care Clare Evans and Ray Jones 13. Research with children who use NHS services: sharing the experience Tina Moules 14. From rhetoric to reality: the involvement of children and young people with mental ill health in research Julia Waldman 15. Strategies for involving service users in outcomes focused research Hannah Morgan and Jennifer Harris 16. Working with older women in research: the opportunities and dilemmas of involvement Joanne Cook and Lorna Warren 17. Service user involvement at all stages of the research process Matthew Harris 18. Working together to undertake research Ruth Northway and Paul Wheeler
Lesley Lowes is a Research Fellow/Practitioner in Paediatric Diabetes at the Nursing, Health and Social Care Research Centre, School of Nursing and Midwifery Studies, Wales College of Medicine, Cardiff University. Ian Hulatt is RCN Advisor for Mental Health Nursing, Royal College of Medicine, London.
'This book is an eye-opener, an inspiration, and a hand-book all at the same time.' - Ingvar Karlberg.' - Professor of Health Services Research, Goteborg University
'We need more books like this, because we need to learn from others' experiences.' - mentalhealth today