"The textbook is the first of its kind to offer guidance to healthcare professionals on caring for babies with life limiting conditions. ... Currently, no other textbook exists offering such guidance specifically for nurses and allied healthcare professionals." (ehospice.com, February 19, 2020)

Neonatal Palliative Care for Nurses

Alexandra Mancini, Jayne Price, Tara Kerr-Elliott

Dedication

Foreward

Julia Downing

Preface

The Editors

Contributors’ list

Acknowledgements

NN Panel

Part I. Achieving Quality Nursing Practice in Neonatal Palliative Care

Chapter 1. Introduction to Neonatal Palliative Care

Neil Marlow*, Katie Gallagher

Corresponding author’s e-mail: n.marlow@ucl.ac.uk

Chapter 2. Exploring the Concept on Neonatal Palliative Care

Brian Carter, Amy Kuelbebeck*

Corresponding author’s e-mail:

Chapter 3. Support for Staff: Building Resilience in Nurses

Rachel Black*, Arlene Honeyman

Corresponding author’s e-mail: Rachelblack@orpheus.org.uk

Chapter 4. The Importance of Effective Communication on the Neonatal Unit

Paula Abramson*, Alexandra Mancini

Corresponding author’s e-mail: paula.abramson@childbereavementuk.org

Chapter 5. Spiritual, Cultural and Religious Care for the Baby and Family

Revd Dorothy Moore-Brooks*, Tara Kerr-Elliott

Corresponding author’s e-mail: dorothy.moorebrooks@gosh.nhs.uk

Chapter 6. Ethical Concepts in Neonatal Palliative Care

Vicki Xafis*, Karen Brombley

Corresponding author’s e-mail: Vicki.Xafis@health.nsw.gov.au

Chapter 7. Legal Issues in Neonatal Palliative Care

Rebecca Fitzpatrick*, Ben Troke

Corresponding author’s e-mail: Rebecca.Fitzpatrick@brownejacobson.com

Chapter 8. The Principles of Genetics within Neonatal Palliative Care

Aoife Bradley

Corresponding author’s e-mail: aoife.bradley@belfasttrust.hscni.net

Chapter 9. Antenatal

Sam Collinge*, Elizabeth Bailey

Corresponding author’s e-mail: Sam.Collinge@uhcw.nhs.uk

Chapter 10. Care of Twins and Multiple Births and Support for the Family: a Detailed Background

Claire Campbell

Corresponding author’s e-mail: Claire.campbell@nuth.nhs.uk

Chapter 11. Care of Twins and Multiple Births and Support for the Family: the Butterfly Project

Nicholas Embleton*, Sarah Stephenson

Corresponding author’s e-mail: Nicholas.embleton@newcastle.ac.uk

Chapter 12. The Decision-Making Process and the Role of the Neonatal Nurse

Katie Gallagher*, Lisa Leppard

Corresponding author’s e-mail: katie.gallagher@ucl.ac.uk

Chapter 13. Advance Care Planning

Jonathan Downie*, Tara Kerr-Elliott, Finella Craig

Corresponding author’s e-mail: jonathan.downie@nhs.net

Chapter 14. Organ and Tissue Donation within Neonatal Palliative and End of Life Care

Angie Scales

Corresponding author’s e-mail: angie.scales@nhsbt.nhs.uk

Chapter 15. Continuing Emotional and Practical Support for the Whole Family

Anne Harris

Corresponding author’s e-mail: anne.harris@rainbowtrust.org.uk

Chapter 16. Fundamental Principles of Effective Symptom Management in Neonatal Palliative Care

Linda Maynard

Corresponding author’s e-mail: linda.maynard@each.org.uk (found via Google, to be confirmed)

Chapter 17. Collaboration between Neonatal Units and Children’s Hospices – Exploring Opportunities for Potentially Improving Care and Offering Choices

Jayne Price*, Rosa Menizabal-Espinosa, Jacqui Morgan, Anna Spicer, Katrina Williams

Corresponding author’s e-mail: j.e.price@sgul.kingston.ac.uk

Chapter 18. Interdisciplinary Working in Neonatal Palliative Care

Patricia McNeill*, Jacqueline Johnstone, Frances Gilmore

Corresponding author’s e-mail: p.mcneilly@qub.ac.uk

Chapter 19. Developing Knowledge and Competence in Neonatal Palliative Care Practice

Sharon Nurse*, Julie Ling, Valerie Peacock

Corresponding author’s e-mail: s.nurse@qub.ac.uk (found via Google, to be confirmed)

Chapter 20. Care of the Baby after Death and Family, and Focus on Post Mortem Examination

Rachel Black*,Tara Kerr-Elliott, Lydia Judge- Kronis, Neil Sebire

Corresponding author’s e-mail: docrachelblack@gmail.com

Part II. Achieving Quality in Neonatal Palliative Care Internationally

Chapter 21. Introduction

Joan Marston

Corresponding author’s e-mail: joan.icpcn@gmail.com

Chapter 22. Australia

Victoria J. Kain

Corresponding author’s e-mail: v.kain@uq.edu.au

Chapter 23. Kuwait

Tracie Dempster

Corresponding author’s e-mail: tracie.dempster@bacch.org

Chapter 24. India

Mary Ann Muckaden

Corresponding author’s e-mail: muckadenma@tmc.gov.in

Chapter 25. Malaysia

Lee Ai CHONG*, Azanna AHMAD KAMAR, Hasimah MOHD YATIM, Halimatun Saadiah HASHIM

Corresponding author’s e-mail: leeailah@yahoo.com

Chapter 26. South Africa

Julia Ambler

Corresponding author’s e-mail: julia@umduduzi.co.za

Chapter 27. Ireland

Claire Quinn*, Marie Lynch

Corresponding author’s e-mail: claire.quinn@nuigalway.ie

Chapter 28. The Netherlands

K.A. Bergman, A.T. Wedzinga-de Vries, A.A.E. Verhagen*

Corresponding author’s e-mail: a.a.e.verhagen@UMCG.nl

Chapter 29. Germany

Ulrike Lindwedel-Reime, Sabine Kraft*

Corresponding author’s e-mail: kraft@bundesverband-kinderhospiz.de

Chapter 30. Singapore

Majella Irudayam*, Lim Sok Bee, Rahimah Bte Bujal, Ann Toh

Corresponding author’s e-mail: majella.irudayam@kkh.com.sg

Chapter 31. Ukraine

Andrey Penkov

Corresponding author’s e-mail: andrey_penkov@mail.ru

Chapter 32. Argentina

Rut Kiman

Corresponding author’s e-mail: rkiman@gmail.com

Chapter 33. Italy

F. Benini*, F. Rusalen, M.E. Cavicchiolo, S. Salvadori, P. Lago
Corresponding author’s e-mail: franca.benini@sanita.padova.it

Chapter 34. Scotland

Evelyn Rodger

Corresponding author’s e-mail: EvelynRodger@chas.org.uk

Chapter 35. France

Dr Pierre Bétrémieux

Corresponding author’s e-mail: pierre.betremieux35@gmail.com

Support Organisations

Index

Alexandra Mancini (Smith) is a neonatal nurse with over 25 years experience and is the Pan London Lead Nurse for Neonatal Palliative Care, the first regional post of its kind. This is a unique post focusing on developing the training and education of staff across the London region and the development of a neonatal palliative care service. Prior to this, Alex was the Neonatal Matron at Chelsea and Westminster Hospital including providing practical and emotional support for families and staff, and has been instrumental in developing local and national guidelines, including robust complex and palliative care pathways.

Alex is lead author for the UK national document ‘Practical guidance for the management of palliative care on neonatal units’ published in 2014. Alex has published widely, including co-authoring book chapters and presents frequently both nationally and internationally. She has held posts as an invited expert member of the Riverside Research Ethics Committee, Clinical Ethics & Advisory Group of a Central London Hospital and sits on the ICPCN’s (International Children’s Palliative Care Network) Expert Advisory Group on Perinatal and Neonatal Palliative Care. Alex is a guest reviewer for British Medical Journal (BMJ) and the Journal of Neonatal Nursing (JNN).

For the last ten years, Alex has developed the National Neonatal Palliative and End of Life Care conference in collaboration with Child Bereavement UK (CBUK) and she is a facilitator for CBUK’s national educational workshops. In 2016, Alex led the development of an online learning module ‘Perinatal Palliative Care’ designed for the Royal College of Midwives, this online module is also available on the ICPCN e learning website.

Building on her educational work over previous years, Alex is passionate about raising awareness on neonatal palliative care, by educating professionals across the UK and internationally, in a variety of settings, including conferences and is currently strengthening working relationships with local children’s hospices.

Alex is an invited guest lecturer at several London universities, including Kings College London, Kingston and London South Bank, teaching Neonatal Palliative and End of Life Care on pre and postgraduate courses. Alex gained a MSc in Complex and Palliative Care for Neonates.

Professor Jayne Price is a children’s nurse whose clinical background is in children's oncology nursing. She was a clinical nurse specialist in children's palliative care, working with children who had advanced cancer and their families. More recently, her experience has encompassed improving care for children with palliative needs (both cancer and non-malignant conditions) and their families, through education and research. Jayne has been instrumental in developing continuing education opportunities for professionals working within the field of children's palliative care, and also in ensuring palliative care is embedded within the undergraduate nursing programme. She has received a number of awards for both education and research in recognition of her work within children's palliative care.

With a specific interest in the psychosocial needs of parents living through the loss of a child, Jayne's doctoral study focused on parents' perspectives of caring for an infant/child with a life-limiting condition. It was during that study that she became interested in perinatal/neonatal palliative care and has carried out some post doctoral research and scholarly work focusing on this aspect of palliative care. Having presented and published widely within the field of children's nursing, nurse education and palliative care, Jayne and her colleague Patricia McNeilly edited a book in 2009, titled 'Palliative care for children and families: An interdisciplinary approach', which has recorded sales worldwide. Her most recent editorial work was with Sage in 2018 where she was lead editor in a textbook for children’s nursing.

Jayne has also been involved in a number of international projects establishing educational initiatives with students to ensure a more global focus for their learning within children’s palliative care. More recently has facilitated an innovative interprofessional learning day with 3rd year midwifery students and children’s nursing students examining collaborative working within the area of perinatal/neonatal palliative care.. She is a Trustee of Shooting Star Children’s Hospices Surrey and is currently Professor of Children’s Nursing and Professional Lead for Children’s Nursing at Kingston University and St George’s University London.

Tara Kerr-Elliott is a children's Nurse with extensive experience working within the field of Children's Palliative Care within the community, children's hospice and hospital settings.

She is also a Well Child Nurse Specialist and Practice Educator within the Louis Dundas Centre for Palliative Care at Great Ormond Street Hospital, London where her role enables her to focus equally on clinical work as well as on teaching and education. More recently, she also became actively involved in research and is committed to driving forward both education and research within Children's Palliative Care.

Tara has a particular interest in the psychosocial aspect of Children's Palliative Care, particularly at the end of life. Her specialist area of knowledge and an area she is passionate about furthering research in, is the care of children and the needs of parents and nursing staff after a death.

Tara is also passionate about palliative care education and the use of simulation based education to support this. She delivers teaching and presentations locally and nationally. She is also the Nurse Advisor to the "Medicine for Children" advisory group.

This textbook details the nursing care of babies with life limiting conditions and sets the context within the philosophy of internationally collaborative neonatal palliative care emphasising emotional and practical support for their families. Currently, increasing interest from nursing and medical fields regarding palliative care for babies in the antenatal and neonatal period is evident.

This innovative and unique text provides experienced nurses and student nurses alike with realistic guidance in caring for babies with palliative care needs, alongside the crucial support for their families and identifies important strategies for professional self care. Nursing experts in this field collaborated to develop a reference book which supports holistic and integrated clinical practice. Parents’ experiences of what they consider helpful or not so helpful are interwoven throughout the chapter.

There is currently no other textbook which offers the above information and guidance specifically for nurses and allied health professionals.

As such this book will appeal to all nurses and health professionals working within the neonatal palliative care specialty in a global context.

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