There is increasing interest in young people’s participation in the design and delivery of health services. But young people’s views are not consistently sought or acknowledged, and they are still often marginalised in healthcare encounters.
Drawing on original research and a diverse range of practice examples, Brady explores the potential for inclusive and diverse approaches to young people’s participation in health services from the perspectives of young people, health professionals and other practitioners.
She presents a practical new framework, embedded in children’s rights, that shows how young people’s participation can be integrated into services in ways that are meaningful, effective and sustainable.
“The new go-to text for anyone who works within health and social care and who wants to build trust and make a real and meaningful difference to children and young people in the future.” Andrew Rowland, The Pennine Acute Hospitals NHS Trust and Chair, SicKids charity
“Provides important practice insights on how practice with young people can be improved and ways they can be given a more meaningful voice in decision making.” Clive Diaz, Cardiff University
“What a feast of expertise and insight! This book is a must read for anyone keen to develop more young-person centred, meaningful and collaborative working practices.” Lucy Bray, Edge Hill University
“We assume we do this well, when considering young people’s participation in health services. This book will stop us in our tracks and help us to radically change how we do this better, by combining research with lived experience. It will act as an aide memoire for both clinicians and policy makers.” Angela Horsley MBE, Head of Children, Young People and Transition NHS England and NHS Improvement.
Louca-Mai Brady is a Senior Research Fellow at the Institute of Ophthalmology, University College London and freelance research and involvement consultant.
Foreword ~ Kath Evans
Introduction: Embedding young people’s participation in healthcare ~ Louca-Mai Brady
Part One: Young people’s participation in individual decision-making
Chapter 1: Shared decision-making with young people in mental health services ~ Kate Martin and Amy Feltham
Chapter 2: Disabled young people’s participation in end-of-life decisions ~ Zoe Picton-Howell
Part Two: Participation in national projects and programmes
Chapter 3: “Giving young people a voice”: lessons from the NHS England Youth Forum ~ Lisa Whiting, Shelia Roberts, Kath Evans and Julia Petty
Chapter 4: RCPCH & Us: Improving healthcare through engagement ~ Emma Sparrow and Mike Linney
Chapter 5: Innovative ways of engaging young people whose voices are less heard ~ Lindsay Starbuck, Kirsche Walker, Jack Welch, Emma Rigby, Ann Hagell
Part Three: Collaborative research in NHS services
Chapter 6: Listening to learn: Enhancing young people’s participation in a large UK Health Trust ~ Barry Percy-Smith, Sarah Kendal, Jo McAllister and Barry Williams
Chapter 7. Shifting Sands: Trying to embed participation in a climate of change ~ Louca-Mai Brady, Emily Roberts, Felicity Hathway and Lizzy Horn
Part Four: Young people-led participation
Chapter 8: Investing in Children: Respecting rights and promoting agency ~ Liam Cairns, Chris Affleck, Chloe Brown and Helen Mulhearn
Chapter 9: RAiISE: Advocating for young people with invisible illnesses ~ Sophie Ainsworth, Jenny (Sammy) Ainsworth, Robyn Challinor, Jennifer Preston, Marie Clapham, Laura Whitty and Simon Stones
Chapter 10: Rhetoric to reality, the need for a new approach ~ Louca-Mai Brady