Children’s Palliative Care: An International Case-Based Manual

Professor Julia Downing, Chief Executive of the International Children’s Palliative Care Network (ICPCN), is an experienced palliative care nurse, educationalist and researcher with a PhD in palliative care education. She has been working within palliative care for 26 years, with eighteen of those working internationally in low and middle income countries, including in Uganda, across Africa, Eastern Europe and globally, developing palliative care services for children and adults. She is recognised as a global leader and expert in the field and sits on various technical and advisory groups. She is the Honorary Professor at Makerere University, Kampala, a Visiting Professor at the University of Belgrade in Serbia, Edge Hill University and the University of South Wales, and an honorary senior research fellow at the Cicely Saunders Institute, King’s College London. She has extensive experience in research, presenting at conferences and writing for publication, and is on the editorial board of the International Journal of Palliative Nursing (IJPN) and ecancer. Professor Downing serves on the Boards of several NGOs including the Worldwide Hospice and Palliative Care Alliance, the International Association of Hospice and Palliative Care, the African Palliative Care Association UK, and the Palliative Care Research Society. She was the recipient of the IJPN’s Development Award in 2006, the Robert Tiffany lectureship from the ISNCC in 2014 and the Pearl Moore “Making a Difference” International Award for Contributions to Cancer Care from the Oncology Nursing Society in 2015. She was also recognised as a leading change agent in oncology in the ‘Women as Change Agents’ publication for International Women’s Day in 2016.

“If you work in paediatric palliative care, you should have this book, as it will make you think about what you do. … And just before you adult palliative care people switch off, I think this book will make you think about your work — I found myself repeatedly asking similar or parallel questions related to the management of adult patients.” (Roger Woodruff, IAHPC Book Reviews, hospicecare.com, Vol. 21 (11), November, 2020)

• Chapter 1. Introduction to children’s palliative care and serious health related suffering, along with how to use this case based manual.- Chapter 2. The need for and gaps in provision of children’s palliative care globally.- Chapter 3. Universal Health Coverage and Serious Health related Suffering (SHS).- Chapter 4. Children’s palliative care across a range of conditions, settings and resources.- Chapter 5. The importance of good holistic assessment.- Chapter 6. Communication to children and their families.- Chapter 7. Pain assessment and management.- Chapter 8. Respiratory care.- Chapter 9. Gastrointestinal symptoms.- Chapter 10. Fatigue.- Chapter 11. Nutritional support.- Chapter 12. Psychological care and distress.- Chapter 13. Spiritual care.- Chapter 14. Social and cultural support.- Chapter 15. End of life care.- Chapter 16. Supporting the family at the time of death.- Chapter 17. Anticipatory grief and bereavement support.- Chapter 18. Perinatal and neonatal palliative care.- Chapter 19. Supporting the adolescent and young adult.- Chapter 20. Managing ethical issues.- Chapter 21. Collaborative working and use of national, regional and international networks.- Chapter 22. Empowering the team through education.- Chapter 23. Integrating research into care.- Chapter 24. Conclusion.- Chapter 25. Index