PatchSA / Bettercare Book on Children’s Palliative Care
Palliative Care for Children
A guide for improving the quality of life of patients and their families
This PatchSA resource is aimed at improving the quality of life and the care of children in South Africa with life-threatening and life-limiting illnesses and conditions and that of their families.
Palliative Care for Children: A guide for improving the quality of life of patients and their families is a useful and easy to read guide on the key elements of children’s palliative care written for doctors, nurses, social workers, psychologists, counsellors, spiritual leaders, teachers, therapists and anyone who interacts with and provides care for seriously ill children.
The book was created as a collaborative project with Bettercare whose materials are used widely by government and private hospitals, non-profit organisations and training institutions in South Africa and other countries and its publication was made possible through generous funding from The Discovery Fund.
It has been written by an experienced multidisciplinary team of experts working within the field of children’s palliative care in South Africa led by Founder of Paedspal and PatchSA Chair Dr Michelle Meiring and PatchSA’s Training Manager, Tracy Rawlins. Other members of the authoring team include Joan Marston, Founder of Sunflower Children’s Hospice and Vice Chair of PatchSA; Dr Julia Ambler, Co-Founder and Medical Director of Umduduzi, Hospice Care for Children; Dr Jan du Plessis, Paediatric Oncologist and Palliative Care Specialist at Universitas Hospital in Bloemfontein; Melissa Williams-Platt, Samuel’s mother, Palliative Coach and Co-Founder of Footprints for Sam; Tracy Brand, Co-Founder and Director of Umduduzi, Hospice Care for Children, and Sue Boucher, Project and Communications Manager at PatchSA with additional editing and input provided by Professor Dave Woods from Bettercare.
Comprehensive in scope, topics covered within the book include:
- Principles and practices of children’s palliative care
- Ethical decision making
- Communication, including breaking bad news and holding difficult conversations
- The management of pain and other distressing symptoms
- Holistic assessment and care planning
- End-of-life care
- Psychosocial and family care
- Spiritual and cultural understanding
- Self-care, teamwork and managing conflict
- Supporting children and families through loss, grief and bereavement
Speaking on behalf of PatchSA about the publication, Dr Michelle Meiring had this to say:
“Research has shown us that in South Africa there are as many as a million children living with complex and life-threatening illnesses who deserve and have the right to receive good palliative care. Yet we estimate that less than 5% of these children actually access it. One of the reasons for this being the relatively low number of people with the relevant knowledge or qualifications to provide this specialist care. For many years PatchSA has been eager to offer a comprehensive resource on children’s palliative care particularly relevant to healthcare providers in South Africa and in fact sub Saharan Africa.”
“The publication of this book marks an enormous milestone for our organisation, one which has been made possible by the generosity of our funders at Discovery as well as by the team of exceptional writers who freely gave of their time and shared their knowledge and expertise with us. We hope that this new resource will prove to be a catalyst in expanding the practice of children’s palliative care in our country and, as a consequence, improving the quality of life of the many thousands of children living with these serious illnesses and conditions and that of their families.”
Dr Meiring went on to say, “I would encourage any person who works with children to purchase a copy of this book and to make use of the excellent free online learning programmes provided by Bettercare.”
The book is dedicated to the memory of Samuel John Frederick Platt, a little boy who spent his entire life in ICU and never went home and whose mother, Melissa Williams-Platt, was part of the authoring team.
The book is also available as an online resource that can be used as part of a study programme as well as in hard copy. The cost of the book is R338.10 including VAT and is available to order from the Bettercare website.