Textbook for Children’s Palliative Care in Africa

445 Pages·3.666 MB·English

by  Amery J.

Children’s Palliative
Care in Africa
Edited by
Dr Justin Amery
Supported by
The Diana, Princess of Wales Memorial Fund
1
1
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There can be no keener revelation of a society’s soul than the way in which
it treats its children.
Nelson Mandela

This book is dedicated to my wonderful family: Karen, Mikey, Mair,
Rhiannon, Florence and Tende

Foreword by Elton John
In 1990, an 18-year-old American haemophiliac named Ryan White died of an AIDS-related
illness. He had been diagnosed with HIV aged 11. At the time, AIDS was seen as a deeply stig-
matised ‘gay disease’. Ryan and his family were regularly subjected to abuse and excluded from
community life. Their astounding acceptance, even forgiveness of this treatment was truly hum-
bling. Because of Ryan, I realised there was so much more I could and should be doing in the fight
against AIDS and this was the inspiration behind establishing The Elton John AIDS Foundation.
We have come a long way since then. Ryan White became a national icon in America and the Ryan
White Care Act is still responsible for the largest number of HIV/AIDS programmes in the USA.
My Foundation has become one of the twenty largest HIV/AIDS charities in the world. Last year
alone, we supported nearly 30,000 children to go on antiretroviral treatment.
If Ryan were sick today, we would know so much more about how to help him – medically and
emotionally. However, we still could not ‘cure’ Ryan’s HIV/AIDS and that is why this book is so
important. Of course health promotion, disease prevention and curative approaches remain our
goal, but this cannot be at the expense of palliative care. Indeed in my view, the two are largely insepa-
rable, and the need is truly mind-boggling. Worldwide, nearly 11 million under-fives are dying every
year. Most of them are living in developing countries, with more than four million of these deaths in
sub-Saharan Africa, where child mortality rates are running at an average rate of 172 deaths
per 1,000 babies born (compared with 9 per 1,000 in developed regions).
For many economic, political, cultural and sociological reasons, palliation and symptom relief
remain the only realistic treatment options for the majority of these children. Our duty is to make
sure it is as good as it can be. One of the things Ryan’s illness taught me is that sick children are
not simply ‘small sick adults’, and children’s palliative care needs to reflect this. Helping very sick
or dying children to understand what is happening to them, and working with them to overcome
the physical, psychological, social and spiritual challenges that come with impending death, is
achievable, easily affordable, and highly rewarding even in the poorest settings with the least
resources.
However, to practice children’s palliative care, health workers do need to gain some additional
knowledge, skills, support and confidence. Unfortunately, in resource-poor settings, it is very rare
for health workers to receive any training in children’s palliative care. Research has shown that,
not surprisingly, health workers feel particularly lacking in confidence and competence in children’s
palliative care and tend to avoid these issues in practice – to the significant detriment of children
who continue to suffer needlessly as a result. However, the research also suggests that health
professionals in Africa (and across the world) see a great need for children’s palliative care, highly
value further training in it and find it extremely rewarding, empowering and satisfying when they
try it for themselves.
x FOREWORD BY ELTON JOHN
For these reasons I applaud the publication of this book, which sets out with understanding
and tenderness the specific palliative care needs of children. It can support thousands of health
workers to better care for children for whom there is no immediate cure; can give them pride and
clarity in their role and can make life better for millions of children around the world.
Ryan would have approved.
Contents
The authors xiii
Acknowledgements xix
List of abbreviations xxi
1 Introduction 1
Section 1: The basics of children’s palliative care
2 Communicating with children and their families 11
Justin Amery, Gillian Chowns, Julia Downing, Eunice Garanganga,
Linda Ganca and Susie Lapwood
3 Play and development 37
Sue Boucher and Justin Amery
4 Assessment and management planning 79
Caroline Rose and Justin Amery
Section 2: Symptom control in children’s palliative care
5 Pain 97
Justin Amery, Michelle Meiring, Renee Albertyn and Sat Jassal
6 Respiratory symptoms 125
Justin Amery and Michelle Meiring
7 Feeding and hydration problems 133
Justin Amery
8 Gastrointestinal symptoms 155
Justin Amery, Michelle Meiring and Caroline Rose
9 Neurological symptoms 171
Justin Amery, Susie Lapwood and Michelle Meiring
10 Skin problems 189
Justin Amery and Michelle Meiring
11 Urinary symptoms 201
Justin Amery and Michelle Meiring
12 HIV/AIDS 207
Justin Amery, Jenny Sengooba, Ivy Kasiyre and Michelle Meiring
Section 3: Holistic care
13 Psychosocial and family care 227
Justin Amery, Nkosazana Ngidi, Caroline Rose, Collette Cunningham,
Carla Horne and Linda Ganca