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Oxford Textbook of Palliative Care for Children


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Table of Contents

Section I: Foundations of care
1: Lorna Fraser, Stephen Connor, and Joan Marston: History and epidemiology
2: Jennifer Mack and Bryan Sisk: Communication
3: Robert MacAuley and Richard Hain: Children are not little adults the distinctiveness of ethics in children
4: Myra Bluebond-Langner and Richard Langner: Decision making with children, young people and parents
5: Erica Brown, Mary Ann Muckaden, and Nokuzola Mndende: Culture, spirituality, religion, and ritual
Section II: Child and family care
6: Nancy Contro and Jane Zimmerman: Assessment of the child and family
7: Myra Bluebond Langner and Ignasi Clemente: Children s views of death
8: Jan Aldridge and Barbara M Sourkes: The psychological impact of life-limiting conditions on the child
9: Chana Korenblum and Finella Craig: Adolescents and young adults
10: Amy Volans and Emma Brown: Children expressing themselves
11: Sue Boucher: Education and school
12: Veronica Dussell and Barbara Jones: Impact on the family
13: Sara Portnoy and Lori Ives Bain: Bereavement
Section III: Symptom care
14: Dilini Rajapakse and Maggie Comac: Overview of symptoms and their assessment in life-limiting illness
15: Andy Gray, Jane Ridden, Richard Hain: Using medication in children s palliative care
16: Antoine Bioy and Chantal Wood: Introduction to pain
17: Stefan J. Friedrichsdorf: Multimodal analgesia in pediatric palliative care
18: Manuel Rigal, Ricardo Martino, and Richard Hain: Opioids and the WHO pain ladder
19: Renee McCulloch and Charles Berde: Difficult pain: adjuvants or co-analgesics
20: David Steinhorn: Integrative approach to pain and other symptoms
21: Jo Laddie, Alta Terblanche, and Michelle Meiring: Gastrointestinal and liver related symptoms in paediatric palliative care
22: Adam Rapoport,Sanjay Mahant and Michelle Meiring: Feeding, cachexia and malnutrition in children s palliative care
23: Julie M. Hauer and Jori Bogetz: Neurological and neuromuscular conditions and symptoms
24: Pamela J. Mosher and Anna C. Muriel: Depression, anxiety, and delirium
25: Emily Harrop and Roxanne Kirsch: Cardiorespiratory symptoms
26: Carol Hlela, Rene Albertyn, and Michelle Meiring: Skin symptoms
27: Mei-Yoke Chan and Kevin Weingarten: Haematological symptoms
28: Michelle Meiring and Tonya Arscott-Mills: Palliative care for children with communicable illnesses
Section IV: Delivery of care
29: Áine Ni Laoire, Daniel Nuzum, Maeve O'Reilly, Marie Twomey, Keelin O Donoghue, and Mary Devins: Perinatal palliative care
30: Brian Carter: Intensive-care units
31: Michelle Grunauer and Jenny Hynson: Planning care
32: Dawn Davies and Justin Baker: Care in the final hours and days
33: Julia Downing and Joan Marston: Delivering care around the world
34: Danai Papadatou: Healthcare providers responses to the death of a child
35: Jan Aldridge and Pat Carragher: Teamwork
36: Fiona Rawlinson and Michelle Meiring: Education
37: Susan Blacker and Rachel Thienprayoon: Quality improvement in paediatric hospice and palliative care
38: Harold Siden and Kimberly Widger: Research in paediatric palliative care
Appendix 1: The Association of Paediatric Palliative Medicine Master Formulary, Fifth Edition, 2020

About the Author

Richard Hain is a Consultant and Clinical Lead in Paediatric Palliative Medicine in Wales. His clinical post is based at the Children's Hospital in Cardiff and he provides an all Wales specialist service via a managed clinical network. He also provides a secondary service for patients in Cardiff and the Vale University Health Board. Richard's academic background is varied and includes postgraduate degrees in pharmacology, professional education, and ethics and
theology. He has co-authored over fifty research and review articles, four books on children's palliative medicine and a large number of book chapters. His primary research interest is in the principles
and practice of paediatric palliative medicine, and he is increasingly focusing on clinical ethics in children at the end of life. He is honorary Professor in the College of Human and Health Sciences at Swansea University.
Adam Rapoport is a general paediatrician with a Masters in bioethics. In 2009, Adam joined the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital as their pediatric consultant. In July 2011, he became the first Medical Director of the Paediatric Advanced Care Team (PACT), the palliative care service at SickKids. PACT provides both inpatient and outpatient palliative care to children with life-threatening illnesses, and their families, including grief and bereavement support. In
2013, Adam became Medical Director at Toronto's first paediatric residential hospice - Emily's House. Adam's academic work focuses on the intersection of his three primary interests' paediatrics,
palliative care, and ethics.
Michelle Meiring is the founding director of Paedspal and a Paediatric Palliative Care Consultant. She has over 13 years experience in paediatric palliative care and in the NGO sector. Her task at Paedspal is to provide management oversight and clinical leadership. Michelle is a senior lecturer in Palliative Medicine at UCT, South Africa where she convenes the paediatric elective for the Postgraduate Diploma at UCT and is also the chairperson of PATCH-SA (a national paediatric palliative care
Ann Goldman is a paediatrician and is Vice President of Together for Short Lives. Ann was the first ever consultant in paediatric palliative care and, in 1986, established the Symptom Care Team at Great Ormond Street Children's Hospital, which was the first multi-disciplinary paediatric palliative care team. Ann has worked in clinical care for the children and their families, research and teaching, and has been at the vanguard of the development of palliative care services for children
nationally and internationally. In 2004, she was awarded The Children's Hospice International Outstanding Leadership award. Ann was presented with the Vittorio Ventafridda Award at the Maruzza Foundation Rome
Conference in November 2014. The award recognizes Ann's dedication and expertise in children's palliative care, both professionally and in her academic career.

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