Involving Children and Young People in Health and Social Care Research

Led by both children?s rights perspectives and methodological arguments, there is an increasing emphasis on children and young people?s participation in health and social care research by researchers, policy makers and funding bodies ? with many now considering the active involvement of children and young people a requirement. There is little exploration of how to address and overcome the many challenges arising from their participation, however.

Divided into five parts, this practical book begins by considering what research with young people is and why we should do it, before leading the reader into how to undertake it. The book then provides practical examples of action and finishes with reflections about the whole process. Bringing together a variety of experienced researchers, from a wide range of backgrounds in health and social care and including young people, the chapters provide insight for practical action, as well as critical and theoretical reflection. Involving Children and Young People in Health and Social Care Research includes issues on:

• Understanding the reasons and processes for involving children and young people in research
• Making sure that involvement is meaningful and not merely tokenistic
• Developing research methods that are commensurate with different ages and abilities
• Ensuring adequate training and preparation, for children, young people and adults to make involvement meaningful
• Power and relationships between young people researchers and adult researchers
• Sustaining young people?s interest and motivation
• Addressing ethical issues that arise throughout the research journey

Committed to partnership and participation throughout the entire process of the active involvement of children and young people in health and social care research, this text provides invaluable insights and is a resource for all those conducting research in and with children and young people.

Introduction Jennie Fleming And Thilo BoeckPart 1: What 1. What Is Research With Young People? Jennie Fleming And Thilo BoeckPart 2: Why 2. Sociological Theories Of Childhood: Reasons For Involving Children And Young People In Research Virginia Morrow 3. Why Participatory Research? Exploring Principles And Practice Roger Smith 4. Using National Standards For Children And Young People’s Participation To Inform Health Research Anna Skeels and Mererid LewisPart 3: How 5. Moving To The Inside – Employing Young People As Researchers Jennie Fleming 6. An Exploration Of How Ethics Inform The Design Of Social Research With Children Under Eleven Years Of Age Vicki Butler 7. How To Make Involvement A Positive Experience – Ensuring Adequate Training, Preparation And Support Darren Sharpe 8. Transforming Relationships Between Adults And Young People Through Improvisation And Performance Kim Sabo FloresPart 4: Action 9. Young Women Researching Access To Sport Leah Fletcher, Melissa Stamp with Liam Cairns 10. The Transition From Practitioner To Researcher: Physiotherapists Undertaking Research With Disabled Children And Young People Dawn Pickering, Karen Visser, Lyn Horrocks And Gabriela Todd 11. Offering Children Confidentiality In Research – What Are The Limits? Lorraine Radford And Jane Ellis 12. Getting The Message Across – Working With Young People To Change Perceptions Of Health Research Paul Chester, Eleanor Kennedy, Lesley Lowes, Alex Greene And David Matthews 13. Young People’s Participation In Service Evaluation Michael Gaffney And Jenny Munro 14. A Long Term Partnership – Adults And Young Researchers Working Together On The Evaluation Of The Children’s Commissioner For Wales Nigel ThomasPart 5: Reflection 15. Medicines For Children: Reflection On How Young People Improve Research Jennifer Newman, Claire Callens, Carly Tibbins And Nicola Madge 16. Peer Research With Children And Young People Reflecting On The Impact Of Adopting A Rights-Based Rationale Peter K Mackie 17. What Is It Really Like To Be A Researcher? Dilemmas, Role Conflict And Reflections On Interviewing Children And Young People Shruti Uppal 18. Youth And Adult Researcher Reflections On Participatory Research In Australia And The United Kingdom Thilo Boeck and Philippa Collin 19. "I’ve Always Had A Passion For Being A Part Of Something Unique" Young People’s Reflections On Being Researchers Harrison Carter, Mayuri Chudasama, Susanna Dobson, Iman Dalenius, Pritesh Nathubhai, Ruth Taylor With Thilo Boeck And Jennie Fleming 20. Conclusion – Emerging Processes For Maximizing The Involvment Of Children And Young People In Reserach Thilo Boeck And Jennie Fleming

Jennie Fleming is Reader in Participatory Research and Social Action and the Director of the Centre for Social Action at De Montfort University, Leicester, UK.

Thilo Boeck is Senior Research Fellow at the Centre for Social Action at De Montfort University, Leicester, UK.