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  • Book
  • © 2020

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

Editors:

  • Endorsed by the International Children’s Palliative Care Network (ICPCN)

  • Offers an international case-based clinical focus, with a focus on the child and the family

  • Employs a multi-disciplinary and international emphasis both in terms of provision of care, and in terms of the contributing authors

  • Integrates physical, psychological, social and spiritual care throughout the cases

  • Addresses the concepts of Serious Health related Suffering (SHS) from the Lancet Commission report, as well as Universal Health Coverage (WHO)

Table of contents (22 chapters)

  1. Front Matter

    Pages i-xxviii
  2. The Need for and Gaps in Provision of Children’s Palliative Care Globally

    • Julia Downing, Stephen Connor, Lorna Fraser
    Pages 1-12
  3. Universal Health Coverage and Serious Health-related Suffering: A Case for Children and Young People

    • Julia Downing, MR. Rajagopal, Lilliana de Lima, Felicia Knaul
    Pages 13-23
  4. Children’s Palliative Care Across a Range of Conditions, Settings and Resources

    • Megan Doherty, Regina Okhuysen-Cawley, Lizzie Chambers
    Pages 25-37
  5. Holistic Assessment

    • Emma Al-Khabbaz, Busisiwe Nkosi, Jane S. Nakawesi
    Pages 39-49
  6. Communication with Children and Their Families

    • Suzanne Boucher, Maha Atout, Katrina McNamara-Goodger
    Pages 51-63
  7. Assessment, Prevention, and Treatment of Pain in Children with Serious Illness

    • Stefan J. Friedrichsdorf, Wendy Cristhyna Gómez García
    Pages 65-94
  8. Respiratory Care

    • Mary Ann Muckaden, Satbir Singh Jassal
    Pages 95-109
  9. Gastrointestinal Symptoms

    • Mercedes Bernadá, Julia Ambler, Leticia Fuentes
    Pages 111-123
  10. Fatigue

    • Christina Vadeboncoeur, Chi-Kong Li
    Pages 125-131
  11. Nutritional Support

    • Ana Forjaz de Lacerda, Gayatri Palat
    Pages 133-144
  12. Psychological Care and Distress

    • Tracey Brand, Tamara Klikovac
    Pages 145-156
  13. Spiritual Care

    • Joan Marston, Giovanna Abbiati Fogliati, Richard W. Bauer
    Pages 157-165
  14. Social and Cultural Support

    • Maraliza de Haan, Elizabeth Nabirye, Lynda Gould
    Pages 167-176
  15. End-of-Life Care

    • Nahla Gafer, Poh Heng Chong
    Pages 177-188
  16. Supporting the Family at the Time of Death

    • Maiara Rodrigues dos Santos, Zipporah Ali, Regina Szylit
    Pages 189-199
  17. Anticipatory Grief and Bereavement Support

    • Jennifer Hunt, Pradnya Talawadekar, Marie Friedel
    Pages 201-210
  18. Perinatal and Neonatal Palliative Care

    • Alexandra Mancini-Smith, Rut Kiman
    Pages 211-221
  19. Supporting the Adolescent and Young Adult

    • Lucy Watts, Julia Downing, Marianne Phillips, Lizzie Chambers
    Pages 223-234
  20. Managing Ethical Issues

    • Amanda Evans, Richard DW. Hain, Delia Birtar
    Pages 235-248

About this book

This manual enables individuals working in children’s palliative care (CPC) globally to learn through engaging real-world cases. The aim is to provide a clinical case-based resource that is globally relevant and accessible to those working in CPC.  Drawing on case histories from around the world that reflect key issues and elements of CPC, it provides a practical approach grounded in experience. It addresses multidisciplinary care in the management of children and their families; discusses cases from an international perspective, and shares examples from a variety of countries, utilising cases across a range of ages and conditions, demonstrating holistic care. It represents the first case-based manual on global CPC and is endorsed and promoted by the International Children’s Palliative Care Network (ICPCN). 


Children’s palliative care is a rapidly developing field, both in the UK and internationally. The provision of CPC varies considerably, with provision often being insufficient, and over 65% of countries having no recognised CPC service provision whatsoever. As such, while there are an estimated 21.6 million children who require palliative care, in many areas of the world, CPC is poor or non-existent, and children are treated like little adults without their distinctive needs being recognised or understood. There is also a dearth of literature on CPC, hence this clinical case-based manual fills a gap in the market, and is aimed at a global audience, making it a unique text in the field.


Reviews

“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)


Editors and Affiliations

  • International Children’s Palliative Care Network, London, UK

    Julia Downing

About the editor

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.

Bibliographic Information

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

  • Editors: Julia Downing

  • DOI: https://doi.org/10.1007/978-3-030-27375-0

  • Publisher: Springer Cham

  • eBook Packages: Medicine, Medicine (R0)

  • Copyright Information: Springer Nature Switzerland AG 2020

  • Softcover ISBN: 978-3-030-27374-3Published: 02 April 2020

  • eBook ISBN: 978-3-030-27375-0Published: 01 April 2020

  • Edition Number: 1

  • Number of Pages: XXVIII, 290

  • Number of Illustrations: 18 b/w illustrations, 15 illustrations in colour

  • Topics: Nursing, Pediatrics, Palliative Medicine