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
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
network).
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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