Deciding with Children in Pediatrics
Children's Participation in Healthcare Decision-Making
- 1st Edition - October 16, 2024
- Imprint: Academic Press
- Editors: John Massie, Georgina Hall, Lynn Gillam
- Language: English
- Paperback ISBN:9 7 8 - 0 - 4 4 3 - 2 2 3 2 3 - 5
- eBook ISBN:9 7 8 - 0 - 4 4 3 - 2 2 3 2 2 - 8
Deciding with Children in Pediatrics: Children’s Participation in Healthcare Decision-making provides the ethical underpinning and offers practical strategies to foster meaningf… Read more
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Request a sales quoteDeciding 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.
- Presents philosophical, ethical, and human rights support for promoting child participation in their healthcare
- Provides practical tools to help clinicians decide with children
- Clarifies the limits of involving children in their healthcare
Medical clinicians (medical, nursing, and allied health) and bioethicists who work with children, Students and academics studying bioethics
- Title of Book
- Cover image
- Title page
- Table of Contents
- Copyright
- Contributors
- About the editors
- Preface
- Why a book on deciding with children?
- Who is this book for?
- What is deciding with children?
- What will you find in this book?
- Acknowledgments
- Chapter 1. Ethical theory and grounding
- Respect for persons and respect for autonomy
- Agency
- Dignity
- Bodily integrity and sovereignty
- Self-regarding
- Epistemic injustice
- Rights
- Conclusion
- Chapter 2. Neurocognitive development and medical decision-making
- Introduction
- The changing brain: Typical childhood neurodevelopment
- The development of children's decision-making
- Adolescent risky decision-making and peer influence
- Conclusion
- Chapter 3. Psychosocial and contextual influences on children's healthcare participation
- Conceptualising psychosocial and contextual influences on deciding with children
- Developmental influences
- Child-related influences
- Family influences
- Situational influences
- Clinician influences
- Integrating our understanding of psychosocial and contextual influences
- Prior healthcare experience and children's medical decision-making
- Conclusion
- Chapter 4. Deciding with children: What is the evidence?
- Introduction
- Terms used to denote participation in decision-making
- Children's participation in decisions
- Children's preferences
- Barriers to participation in decision-making
- Inadequate information
- Type of decision
- Power relations
- Role of parents
- Healthcare professionals' role
- What helps promote children's participation in decisions?
- Conclusion
- Chapter 5. Traditional approaches to child and adolescent decision-making
- Introduction
- The adolescent who might have adult-like decisional capacity
- Children who don't have adult-like decision-making capacity
- Moving beyond the decisional authority of the child
- Conclusion
- Chapter 6. Deciding with children: The model
- Introduction
- Deciding with children in pediatric practice
- DwC as shared decision-making with children
- Shared decision-making in brief
- Translating SDM to the pediatric setting
- Deciding with children: Shared decision-making with children
- Deciding with children: The model
- The model in summary
- Stakeholder roles in deciding with children
- Child role in deciding with children
- Parent role in deciding with children
- Clinician role in deciding with children
- Conclusion
- Chapter 7. Challenges and limits in deciding with children
- Introduction
- The challenge of degree (part 1)
- Question 1: How much should we decide with children?
- The challenge of degree (part 2)
- Question 2: How hard should we try to decide with children?
- The child who is silent
- Question 3: How should clinicians decide with children when the child's voice is absent?
- The child who speaks
- Question 4: How should we interpret the expressed wishes of the child?
- The challenge of conflict (part 1)
- Question 5: What should we do when deciding with children, conflicts with shared decision-making with parents?
- The challenge of conflict (part 2)
- Question 6: What should we do when deciding with children, conflicts with the best interests of the child?
- Conclusions
- Chapter 8. Decision-making with young children (including those with attention deficit hyperactivity disorder)
- Clinician response: Dr. Daryl Efron
- Ethicist response: Associate Professor Rosalind McDougall
- Shaping children's choices within the context of deciding with children
- Limiting children's choices based on harm to others
- Clinician response: Dr. Daryl Efron
- Ethicist response: Associate Professor Rosalind McDougall
- Achieving the best outcome by sensitivity to the child's view
- Is deciding with children an ethical obligation for health professionals only?
- Chapter 9. Decision-making with adolescents
- Clinician response: Dr. Mick Creati
- Ethicist response: Professor Douglas Diekema
- Clinician response: Dr. Mick Creati
- Ethicist response: Professor Douglas Diekema
- Chapter 10. Giving voice when no one is listening: the role for nurses in deciding with children
- Clinician response: Dr. Jenny O'Neill
- Clinician response: Dr. Jenny O'Neill
- Final word-both cases
- Ethicist response: Dr. Georgina Morley
- Final word
- Chapter 11. Deciding with children when the stakes are high (oncology)
- Clinician response: Dr. Molly Williams & Ms. Jayne Harrison
- Ethicist response: Dr. Tamara Zutlevics
- Chapter 12. Deciding with children-beyond disability
- Clinician response: Dr. Giuliana Antolovich
- Ethicist response: Dr. Jennifer Kett
- Chapter 13. Giving voice: Allied health as supporters of children's decision-making
- Clinician response: Ms. Charlotte Barr
- Ethicist response: Professor Clare Delany
- Moral agency of children
- Clinician response: Ms. Charlotte Barr
- Ethicist response: Professor Clare Delany
- Chapter 14. Deciding with children who know more than you: Cystic fibrosis as a chronic disease
- Clinican response: Dr. Katherine Frayman
- Clinican response: Dr. Katherine Frayman
- Clinican response: Dr Katherine Frayman
- Ethicist response: Dr. Bryanna Moore
- Benefits and harms in the context of chronic illness
- Data on the perspectives of children and adolescents with cystic fibrosis
- The goal of deciding with children
- The stakes of deciding with children like Simon
- Chapter 15. Deciding with children—Surgery
- Clinician response: Professor Tony Penington
- Ethicist response: Dr. Joe Brierley
- Deciding with children about surgery
- The role of the parents
- The role of Ibrahim
- The role of the surgeon
- The role of a clinical ethics service
- Chapter 16. Deciding with children: Putting theory into practice
- Deciding with children—Key messages
- Operationalizing deciding with children
- Create space and time for child to participate in their healthcare
- Listen to the child
- Recognize and support epistemic authority of child
- Create a triadic relationship
- Assess, foster and encourage willingness to participate in decision-making
- Consider and support the child's ability to participate in decision-making
- Be honest with children
- Engage with parents
- Coach the child and parent
- Moving toward the final decision
- A final word
- Index
- Edition: 1
- Published: October 16, 2024
- Imprint: Academic Press
- No. of pages: 250
- Language: English
- Paperback ISBN: 9780443223235
- eBook ISBN: 9780443223228
JM
John Massie
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.
Affiliations and expertise
Consultant, Department of Respiratory Medicine, The Royal Children's Hospital Melbourne, Victoria, AustraliaGH
Georgina Hall
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.
Affiliations and expertise
Children’s Bioethics Centre, Royal Children’s Hospital, Melbourne, Victoria, AustraliaLG
Lynn Gillam
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.
Affiliations and expertise
Academic Director, Children’s Bioethics Centre, Royal Children’s Hospital Melbourne, Victoria, AustraliaRead Deciding with Children in Pediatrics on ScienceDirect