22 June 2020

Palliative Care for Children: Exciting new resource launched in South Africa

Submitted by: Sue Boucher
Palliative Care for Children: Exciting new resource launched in South Africa

Palliative Treatment for Children South Africa (PatchSA) is thrilled to announce the official launch of their latest resource 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 published in collaboration 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.

The book has been written by an experienced multidisciplinary team of experts working within the field of children's palliative care in South Africa led by Paedspal Founder, Paediatric Pain and Palliative Care Specialist and PatchSA Chair Dr Michelle Meiring and PatchSA's Training Manager, Tracy Rawlins. Other members of the authoring team include Joan Marston, Global Children’s Palliative Care Advocate, 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 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, breaking bad news and holding difficult conversations, the management of pain and other distressing symptoms, end-of-life care, holistic assessment and care planning, family care, spiritual and cultural understanding, self-care, teamwork, managing conflict, and 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 specialist care. For many years PatchSA has been eager to offer a comprehensive resource on children's palliative care particularly relevant to health care 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 through the generosity of our funders at Discovery as well as by the team of exceptional writers who willingly 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 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.

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About PatchSA

Palliative Treatment for Children (Patch) South Africa is an inclusive and compassionate network that aims to share specialised knowledge, tools, resources and opportunities to ensure the best possible care for children with life-threatening and life-limiting illnesses, and to provide support to healthcare professionals, families and lay caregivers.Our vision is to ensure the right of every child to access quality palliative care in South Africa and our mission is to mobilise and support a sustainable network of individuals, organisations, professionals and caregivers to provide holistic and culturally appropriate palliative care for children and their families from diagnosis to bereavement.

This is done in the following ways:

Support: PatchSA works to ensure the voice of the child and family informs all activities of our network. We promote care for the health care providers and lay caregivers providing day to day care to these children.

Advocacy: PatchSA is a strong collaborative voice for the right of children to receive quality palliative care.  We aim to  influence policy development in children's palliative care and to advocate for the integration of palliative care into all children's services.

Information:  PatchSA provides a comprehensive source of information on children's palliative care and service providers within our borders.  We develop locally appropriate guidelines and standards for children's palliative care including information on loss, grief and bereavement for children.

Education: PatchSA provides evidence-based education in children's palliative care for professionals and caregivers.

Research: PatchSA signposts research relevant to children's palliative care in order to drive the research agenda for evidence-based children's palliative care.Find out more at: www.patchsa.org 

Learn more at www.patchsa.org

 

For further information please contact:

Sue Boucher  PatchSA Project & Communications Manager
Email:  This email address is being protected from spambots. You need JavaScript enabled to view it.

Cell: 0823744632

For radio or TV interview purposes, please contact:
Dr Michelle Meiring
PatchSA Steering Committee Chair
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Cell:  082 408 7102

Published in Health and Medicine