Palliative Care for Children
Palliative Care for Children improves the lives of patients and their families and is an approach that involves treating the whole person (body, mind and spirit), rather than just their illness. It can be applied to all levels of care. Chapters cover:
- the principles and practice of palliative care for children
- ethics and decision making
- communication
- teamwork, managing conflict and self-care
- holistic assessment and palliative care planning
- psychosocial care and support
- cultural understanding and spiritual care
- pain management
- management of respiratory and gastrointestinal symptoms
- management of neurological, nutritional and skin symptoms
- end-of-life care
- loss, grief and bereavement.
- Full title: Palliative Care for Children: Improving the quality of life of patients and their families
- Author(s): The PatchSA Training Team
- Print ISBN: 978-1-928313-17-5
- Reflowable ebook ISBN: 978-1-928313-17-5
- PDF-ebook ISBN: 978-1-928313-17-5
About the authors
Dr Michelle Meiring is a Paediatrician with a special interest in Palliative Care and Chronic Pain Management. She is the Founding Director of Paedspal, an NGO that provides a paediatric palliative care service to public and private patients in Cape Town. Academically she convenes the Post-Graduate Diploma in Paediatric Palliative Medicine at UCT. An active advocate, Dr Meiring chairs PatchSA (the South African Children’s Palliative Care Network) and is engaged in policy-making nationally.
Sr. Tracy Rawlins is a qualified professional nurse, midwife and health educator. Her experience in caring for the terminally ill in her community laid the foundation for her qualification in adult palliative care but her heart and passion has always been in working with babies and children. In 2017 she successfully completed her post-grad diploma in Paediatric Palliative care medicine, cum laude. Her current role as the training co-ordinator for Patch has afforded her the opportunity to combine both her passion for facilitation and training and at the same time, assist in caring and supporting children with serious illnesses and families.
Dr Julia Ambler graduated from UCT with her MBChB in 1998. After her junior doctor years, she spent 6 years in Oxford, UK returning home in early 2008. Whilst in the UK she trained and worked as a general practitioner and a children’s hospice doctor at Helen and Douglas Houses in Oxford. Since returning to South Africa in 2008 Julia has focused on providing paediatric palliative care services in her home province of KwaZulu-Natal. She is currently deputy director and head of clinical services at Umduduzi – Hospice Care for Children. In her role, she consults in children’s palliative care and trains health professionals and medical students. She is a sessional lecturer in the Department of Paediatrics, Nelson Mandela Medical School, University of KwaZulu-Natal. She is also a workshop facilitator for the Medical Protection Society.
Sue Boucher is a qualified teacher, a published author, and a digital communications consultant. Leaving a 30-year career in education as a teacher, Head of Department and School Principal, she was appointed to the position of International Information Officer for the International Children’s Palliative Care Network (ICPCN) in December 2007. In this role she contributed to the development of their training curriculum, created their Training of Trainers course and was involved in educating healthcare professionals in children’s palliative care across Africa and internationally. She created and oversaw the development of the ICPCN Pain Assessment App for Children and left ICPCN in July 2019 as their Director of Communications. She has been a contributing author to several textbooks, books, papers and journal articles on children’s palliative care since 2008 and presently works as a Training and Communications Consultant to PatchSA.
Tracey Brand graduated from the then University of Natal, Durban with an Honours Degree in Social Work in 1995. She started her career as a social worker for the Margate & District Child & Family Welfare Society. From there she moved on to project manage various AIDS programmes, focusing on the care and well-being of children. In 2003 Tracey graduated from the University of KwaZulu-Natal, Durban with a Master of Social Work (Clinical Practice) and she also holds a post-graduate diploma in Marriage Guidance & Counselling. From 2008 to 2012, as project manager, Tracey opened the Durban Branch of the Bigshoes Foundation. It was through this work that she cultivated an interest in paediatric palliative care. Since then Tracey has been involved in teaching and training doctors, nurses and social workers in paediatric palliative care and has designed course work material for this purpose. She also provides direct services to children and their families. In January 2013 Tracey co-founded Umduduzi – Hospice Care for Children, an NPO set up to continue the work of Bigshoes in KZN. She is also an honorary lecturer in the Department of Paediatrics, UKZN Nelson Mandela Medical School.
Dr Jan du Plessis is a paediatric oncologist at the Universitas Academic Hospital in Bloemfontein. He obtained his undergraduate degree (MBChB) at the University of the Free State in 1995. Thereafter, he completed his internship at the Bloemfontein Hospital Complex. His post-graduate qualification as a general paediatrician (MMed Paed) was obtained from the University of the Free State in 2003. Dr du Plessis then continued his studies and obtained his Certificate in Medical Oncology (Paediatrics) from the Colleges of Medicine (SA) in 2006. He completed a 2-year fellowship in Paediatric Haematology/Oncology and Bone Marrow Transplantation at the Sydney Children’s Hospital in Sydney, Australia. Dr du Plessis did the diploma in palliative care at the University of Cape Town in 2013 and completed and obtained the MPhil in Palliative Medicine degree from the University of Cape Town in 2016. Currently, he is acting as the head of Paediatric Oncology and is also a lecturer at the University of the Free State for both undergraduate and postgraduate medical students. He has a special interest in paediatric palliative care and haemophilia.
Joan Marston is a Professional Nurse with 31 years’ experience in palliative care for children at local, national and international level. She is the founder of Sunflower Children’s Hospice in Bloemfontein and as the national paediatric development manager for the Hospice Palliative Care Association of South Africa from 2007 – 2010, Joan and her team developed a strategy for a national network of services, promoting the considerable growth of the number of children’s palliative care services for children in South Africa. She is the past CEO of the international Children’s Palliative Care Network and remains as a Global Ambassador for the organisation. Joan has been involved in paediatric curriculum development since 2004 and has written numerous articles and publications on the subject, including for the World Health Organization (WHO). She has a special interest in spiritual care of children and palliative care in humanitarian emergencies.
Melissa Williams-Platt is a wife, Sam’s Mum and a bereaved parent. She is also a palliative coach, a speaker and a professional consultant now strategically focused on the paediatric healthcare sector, through her company Kotula Management Services. Melissa has studied a Post Graduate Diploma in Palliative Medicine at UCT (University of Cape Town), Coaching at the Centre of Coaching at UCT’s Graduate School of Business, and has a Bachelor of Arts Degree from Rhodes University. Melissa is passionate about patient and child advocacy and child and family centred healthcare. Melissa is Co-Founder of Footprints4Sam, a Trust formed in memory of their son, Samuel. The mission of the Trust is to leave footprints of change in neonatal and paediatric ICU wards countrywide. Melissa’s senior management experience has been in heading up teams in sales, marketing and business development for many years and her consulting, coaching and advocacy work has inspired positive growth, resilience and change in the families, individuals and teams she has worked with both in the healthcare environment, as well as in the commercial sector.
Acknowledgements
We wish to gratefully acknowledge the contributions made by a team of passionate and compassionate authors in the development of Palliative Care for Children: A guide for improving the quality of life of patients and their families. In particular, we would like to recognise Mrs Tracy Rawlins, the Palliative Treatment for SA (PatchSA) national training coordinator. Tracy played a major role in collecting, collating and arranging the required training material for the book.
Palliative Care for Children: A guide for improving the quality of life of patients and their families was developed by the PatchSA Training Team consisting of Dr Michelle Meiring, Mrs Tracy Rawlins, Dr Julia Ambler, Dr Jan du Plessis, Mrs Joan Marston, Ms Tracey Brand, Mrs Melissa Williams-Platt and Ms Sue Boucher. The members of this team possess a wealth of knowledge and experience in the field of palliative care for children within South Africa and their writing encompasses the perspectives of a bereaved parent, nurses, doctors, a social worker and a teacher.
A generous grant from the Discovery Fund enabled the development and publishing of this book.
Dedication
In memory of Samuel John Frederick Platt
– 9 April 2015 to 22 July 2016 –
A little boy who spent his entire life in ICU and never went home
