Children's Palliative Care in Africa

Children's palliative care has developed rapidly as a discipline, as health care professionals recognise 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, 84% 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 on 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. Whilst containing some theory, the emphasis is on practical action throughout. It will provide 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.

1. Introduction. Section 1: The basics of children's palliative care. 2. Communicating with children and their families. 3. Play and development. 4. Assessment and management planning. Section 2: Symptom control in children's palliative care. 5. Pain. 6. Respiratory symptoms. 7. Feeding and hydration problems. 8. Gastrointestinal symptoms. 9. Neurological symptoms. 10. Skin problems. 11. Urinary symptoms. 12. HIV/AIDS. Section 3: Holistic care. 13. Psychosocial and family care. 14. Pre-bereavement and bereavement. 15. Spirituality. 16. Palliative care for adolescents. 17. Ethics and law. Section 4: Bringing it all together - caring at the end of life. 18. Caring for children at the end of life. Section 5: Caring for yourself. 19. Caring for yourself. Section 6: Children's palliative care formulary for Africa. 20. Formulary.

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.