Deciding with Children in Pediatrics Children's participation in healthcare decision-making

Langue : Anglais

Coordonnateurs : Massie John, Hall Georgina, Gillam Lynn

Résumé
Sommaire
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Commentaire

Deciding with Children in Pediatric Healthcare: An Ethical Guide to Involving Children in Medical Decision Making provides both the ethical underpinning and practical strategies to meaningfully involve children in decisions that affect their healthcare. The book assists clinicians in bringing the perspectives and values of the child forward so that their preferences can be meaningfully 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 ongoing decision-makers in the future. The book begins by reviewing theories underpinning the concept of then presents models for making healthcare decisions with children. Further, clinicians and ethicists come together to demonstrate how to include children in specific cases that cover multiple clinical areas as well as child ages and developments stages. The book concludes with a review of questions, concerns, and challenges.

PART A: WHY DECIDE WITH CHILDREN? THEORIES UNDERPINNING THE CONCEPT. WAYS OF DOING IT- PAST AND PRESENT 1. Ethical Theory and Grounding 2. Neurological and Psychosocial Development 3. Limitations in Current Approaches to Understanding the Role of Children and Adolescents in Healthcare Decision-making PART B: DEVELOPING A MODEL FOR DECIDING WITH CHILDREN 4. Evolution from Infant to Young Adult- Pas de Deux to Pas de Trois, Involving the Child in Shared Decision-making 5. Deciding with Children: What is the Evidence? What is the Research Telling Us? 6. Pushing Back against Deciding with Children PART C: PRACTICAL ASPECTS OF DECIDING WITH CHILDREN 7. Decision-making with Young Children (Including Those with Autistic Spectrum Disorder) 8. Decision-making with Adolescents 9. Deciding with Children When the Stakes are High (Oncology) 10. Deciding with Children — Beyond Disability 11. Deciding with Children — Surgery 12. Deciding with Children Who Know More Than You — Chronic Disease (CF T1DM) 13. Giving Voice: Allied Health as Supporters of Children’s Decision-making 14. Giving Voice when No-one is Listening. The Role for Nurses in Deciding with Children PART D: QUESTIONS, CONCERNS AND CHALLENGES 15. Conclusion

John Massie, MBBS, FRACP, PhD, earned degrees from the University of Sydney and the Diploma of Child Health, specialist qualifications as a pediatric respiratory physician, then a PhD in cystic fibrosis through the University of Sydney in 1999. He has been a consultant in the Department of Respiratory Medicine, Royal Children’s Hospital since 1999, is an honorary Clinical Associate Professor in the Department of Pediatrics, University of Melbourne and Research Fellow at the Murdoch Children’s Research Institute. Professor Massie is the Clinical Director of the CBC, a joint initiative of the Royal Children’s Hospital, The University of Melbourne, and the Murdoch Children’s Research Institute. The CBC is the pre-eminent pediatric bioethics center in Australia with an international reputation for both clinical work and academic output. Professor Massie has published extensively on various aspects of pediatric respiratory medicine and bioethics and hosts the popular podcast show, Essential Ethics.
Georgina Hall holds a Masters degree in Bioethics from Monash University and a PhD from the Centre for Population and Global Health and Society, University of Melbourne. Georgina has a background in clinical pediatric ethics as a foundation member of the Children’s Bioethics Centre at the Royal Children’s Hospital in Melbourne. Her main research interest is reproductive ethics, in particular the welfare and best interests of future children born of assisted reproductive treatment. She sits on the Clinical Ethics Committee of the Monash Health network and is involved with teaching ethics to medical students at Monash University.
Lynn Gillam is an experienced clinical ethicist, originally trained in philosophy (MA, Oxon, as a Rhodes Scholar) and bioethics (PhD, Monash). She is Academic Director of the Children’s Bioethics Centre at the Royal Children’s Hospital Melbourne where she provides policy advice, leads research, and has been involved in over 200 ethics consultatio

Presents ethical, legal, and human rights support for involving children in healthcare decisions
Provides practical tools to help clinicians decide with children
Clarifies the limits of involving children in their healthcare