Deciding with Children in Pediatrics: Children’s Participation in Healthcare Decision-making provides the ethical underpinning and offers practical strategies to foster meaningful participation of children in decisions affecting their healthcare. It will assist clinicians to bring forward the perspectives and values of the child, ensuring their preferences are incorporated into decision-making or appropriately justified when this is not possible. This is to both improve healthcare delivery and serve the best interests of children- now and as decision-makers in the future. This book reviews theories underpinning the concept of deciding with children and explores how pediatric decision-making is standardly managed. It then proposes a model for making healthcare decisions with children. A panel of experienced clinicians and ethicists demonstrate, via a series of case studies, how to promote children’s participation across a variety of clinical areas, child ages, and developmental stages. It concludes with a review of questions, concerns, and challenges. Deciding with Children in Pediatrics: Children’s Participation in Healthcare Decision:making helps bridge the gap between philosophy and practical clinical ethics and creates a frame of reference for children’s healthcare providers.
Table of Contents
1. Ethical theory and grounding David Archard and Georgina Hall 2. Neurocognitive development and medical decision-making Judah Ping Ern Teo, Nikita Tuli Sood, Carmen Pace, and Marc Seal 3. Psychosocial & contextual influences on children’s healthcare participation Lorraine Swords 4. Deciding with children: What is the evidence? Imelda Coyne 5. Traditional approaches to child and adolescent decision-making Lynn Gillam 6. Deciding with children: The model John Massie and Sharon Feldman 7. Challenges and limits in deciding with children Dominic Wilkinson 8. Decision-makirng with young children (including those with attention deficit hyperactivity disorder) Daryl Efron and Rosalind Mcdougall 9. Decision-making with adolescents Mick Creati and Douglas Diekema 10. Giving voice when no-one is listening. The role for nurses in deciding with children Jenny O’Neill and Georgina Morley 11. Deciding with children when the stakes are high (oncology) Molly Williams, Jayne Harrison and Tamara Zutlevics 12. Deciding with children-beyond disability Giuliana Antolovich and Jennifer Kett 13. Giving voice: Allied health as supporters of children’s decision-making Charlotte Barr and Clare Delany 14. Deciding with children who know more than you. Cystic fibrosis as a chronic disease Katherine Frayman and Bryanna Moore 15. Deciding with children--Surgery Tony Penington and Joe Brierly 16. Deciding with children: Putting theory into practice John Massie, Georgina Hall and Lynn Gillam
Authors
John Massie Consultant, Department of Respiratory Medicine, The Royal Children's Hospital Melbourne, Victoria, Australia.Professor John Massie is the Clinical Director of the Children's Bioethics Centre and senior consultant in the Department of Respiratory and Sleep Medicine, The Royal Children's Hospital, Melbourne, Australia. He is also a Professorial Fellow, Department of Paediatrics, University of Melbourne. In his clinical role, John looks after children with neuro-disability requiring ventilator support and also works in the RCH cystic fibrosis clinic. At the CBC, John provides clinical leadership, liaison with clinical staff, ethics advice to RCH executive and supports the CBC building capacity in bioethics across the campus. John has a particular interest in decision-making with children. He has published a number of papers and book chapters relating to ethical issues in paediatric respiratory medicine and the medical humanities. John is the host of the CBC podcast show, Essential Ethics.
Georgina Hall Children's Bioethics Centre, Royal Children's Hospital, Melbourne, Victoria, Australia.Dr Georgina Hall is a Clinical Ethicist at the CBC. She is trained in Bioethics (MBioeth, Monash, PhD Bioeth University of Melbourne) and communications (BAJourn, RMIT). Georgina has been involved with the Centre since its inception in 2008. She oversees the development and delivery of a wide range of traditional and innovative education and training programs within the Centre aimed at advancing the ethical literacy of all hospital staff. She is convenor of the monthly Bioethics Forum and a member of the Clinical Ethics Response Group. Her research interests include reproductive ethics and IVF access decision-making, the child's voice in pediatrics and the impact and implications of social media, AI and media coverage on healthcare delivery.
Lynn Gillam Academic Director, Children's Bioethics Centre, Royal Children's Hospital Melbourne, Victoria, Australia.Professor Lynn Gillam is the Academic Director and Clinical Ethicist at the Children's Bioethics Centre. She is an experienced clinical ethicist, originally trained in philosophy (MA, 1988, Oxon) and bioethics (PhD, Monash, 2000). Lynn is also Professor in Health Ethics at the University of Melbourne, in the Department of Paediatrics. At the CBC, Lynn leads clinical ethics case consultations, ethics rounds and education sessions for clinical departments at The Royal Children's Hospital, Melbourne, Australia. She also provides policy advice and leads research into a range of issues in paediatric clinical ethics - including end of life decision-making, management of differences of sex development, information-giving to children, and parental refusal of treatment.
