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More About This Textbook
Overview
Childen's palliative care has developed rapidly as a discipline, as health care professionals recognize that the principles of adult palliative care may not always be applicable to children at the end of life. The unique needs of dying children are particularly evident across Africa, where the scale of the problem is overwhelming, and the figures so enormous that they are barely comprehensible: over 400,000 children in Africa died from AIDS in 2003, and out of the 166,000 children a year diagnosed with cancer, 85% of these are in the developing world. Despite the enormous need, provision of children's palliative care in Africa is almost non-existent, with very few health workers trained and confident to provide care for dying children. The challenges of providing palliative care in this setting are different to those in more developed countries, contending with the shortage of physical and human resources in addition to the vast scope of the care needed.
Written by a group with wide experience of caring for dying children in Africa, this book provides practical, realistic guidance by improving access to, and delivery of, palliative care in this demanding setting. It looks at the themes common to palliative care--including communication, assessment, symptom management, psychosocial issues, ethical dilemmas, end of life care, and tips for the professional on compassion and conservation of energy--but always retains the focus on the particular needs of the health care professional in Africa. While containing some theory, the emphasis is on practical action throughout the book. Children's Palliative Care in Africa provides health care professionals working in Africa, and other resource-poor settings, with the confidence, knowledge, and capacity to improve care for the terminally ill child in constrained and demanding environments.
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Meet the Author
Justin Amery was Medical Director at Helen House (the world's first children's hospice) from 1995-2005, and helped design, develop, and direct one of the world's first hospices for young adults, Douglas House. In 2006 he became Clinical Director at Hospice Africa Uganda, setting up a new Children's Palliative Care service, coordinating the Distance Learning Diploma Course in Palliative Care, and developing a new post-graduate certificate course in children's palliative care. His current work at the Diana Fund involves developing children's palliative care resource centres and training courses in Africa. He also works with Great Ormond Street Children's Hospital, helping develop and integrate children's palliative care services in London. His main research interest is training and education for health workers in children's palliative care, and he is also a GP trainer. He has written widely on children's palliative care, the development of health services, and patient involvement in health care.
Table of 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 Justin Amery Gillian Chowns Julia Downing Eunice Garanganga Linda Ganca Susie Lapwood 11
3 Play and development Sue Boucher Justin Amery 37
4 Assessment and management planning Caroline Rose Justin Amery 79
Section 2 Symptom control in children's palliative care
5 Pain Justin Amery Michelle Meiring Renee Albertyn Sat Jassal 97
6 Respiratory symptoms Justin Amery Michelle Meiring 125
7 Feeding and hydration problems Justin Amery 113
8 Gastrointestinal symptoms Justin Amery Michelle Meiring Caroline Rose 155
9 Neurological symptoms Justin Amery Susie Lapwood Michelle Meiring 171
10 Skin problems Justin Amery Michelle Meiring 189
11 Urinary symptoms Justin Amery Michelle Meiring 201
12 HIV/AIDS Justin Amery Jenny Sengooba Ivy Kasiyre Michelle Meiring 207
Section 3 Holistic care
13 Psychosocial and family care Justin Amery Nkosazana Ngidi Caroline Rose Collette Cunningham Carta Horne Linda Ganca 227
14 Pre-bereavement and bereavement Justin Amery Collette Cunningham Nkosazana Ngidi Eunice Gamnganga Carlu Horne Jenny Ssengooba 24
15 Spirituality Justin Amery Eunice Gamnganga Carlu Horne 271
16 Palliative care for adolescents Justin Amery Julia Downing Collette Cunningham 289
17 Ethics and law Justin Amery Joan Marston Nkosazana Ngidi 30
Section 4 Bringing it all together - caring at the end of life
18 Caring for children at the end of life Michelle Meiring Justin Amery 327
Section 5 Caring for yourself
19 Caring for yourself Justin Amery Mary Bunn Susie LapwoadGillian Chowns 351
Section 6 Children's palliative care formulary for Africa
20 Formulary Justin Amery Sat Jassal 377
Further reading 411
Index 41