Children’s Palliative Care Resources
There are a wide range of resources available around the world on children’s palliative care. Here we signpost you to some of them, although there are a lot more available both in English and in other languages:
Books on CPC
2021 – The Oxford Textbook of PC for Children – 3rd Edition (Hain R, Goldman A, Rapoport A and Meiring M. Oxford University Press)
This book is being sold on a range of websites including Oxford University Press and can be purchased as an online edition or in print.
- Identifies the medical, psychological, practical, and spiritual issues of caring for terminally ill children and their families
- Promotes a model of care that addresses the complex and multifaceted needs of children with life-threatening illnesses and their families
- Includes two new chapters looking in detail at ‘Decision Making’ and ‘Perinatal Care’ and a new section highlighting the emerging importance of ‘Palliative Care for Children in Humanitarian Crises’
- Has a new section providing the voices of two parents telling their stories, offering thoughtful recommendations to clinicians
- Is an Award Winner in the Paediatrics Category at the BMA Medicine Book Awards
2021 – Medicine Palliative chez les enfants et adolescents (Asrudilo W, et al (Eds.) Paliativos Sin Fronteras)
Ce livre de Palliatifs Sans Frontière (PSF), une ONG sanitaire internationale de palliatifs, a trois objectifs : améliorer l’attention qui est donnée aux enfants et aux adolescents dans des conditions qui menacent ou limitent leur vie ; soutenir leurs familles pendant la maladie et dans la phase du deuil et promouvoir la solidarité oncologique et palliative pédiatrique avec les pays de moins de ressources. Il représente un effort international de 92 auteurs, beaucoup d’entre eux des professeurs universitaires y des pédiatres palliatifs, afin de trouver des manières de satisfaire les besoins des enfants et des familles en ces circonstances. Ses 59 chapitres se distribuent en 10 sections qui traitent les bases de SPP, la gestion des symptômes, le cancer des enfants et des adolescents, les SP dans d’autres situations, le soulagement de la souffrance, l’attention à la famille, aux nécessités psycho-sociales, le travail d’équipe et les professionnels, la coopération en oncologie et palliatifs, et la bioéthique et les droits des enfants dans des situations qui mettent en danger ou limitent leur existence.
2020 – Medicina Palliative en Ninos y Adolescentes. (Asrudilo et al. (Eds.) Paliativos Sin Fronteras)
Paliativos Sin Fronteras considera que este libro puede ser un instrumento muy eficaz para proporcionar un mayor bienestar de los niños y adolescentes, reducir su sufrimiento y acrecentar el apoyo social a sus familias. Por estos motivos, trabaja por la cooperación internacional con países de recursos reducidos a través de la formación de profesionales en paliativos y dolor y el apoyo a la creación y mantenimiento de estructuras en estos campos.
2020 – Children’s Palliative Care: An International Case-Based Manual (Downing (Eds) Springer)
This book is being sold on a range of websites including Springer and can be purchased as an ebook or in print.
This manual, edited by ICPCN enables individuals working in children’s palliative care 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).
2016 – A really practical handbook of children’s palliative care (Amery J Eds)
PLEASE NOTE: This book is made freely available by the author in order to improve the provision of Children’s Palliative Care around the world. Please feel free to download it, copy it and send it to as many of your colleagues as you’d like. However, please do not amend the content in any way.
If you would like to translate this book into a different language please contact ICPCN at firstname.lastname@example.org
A review of the book by Hannah Tearle, Senior Sister, Children’s Inpatient Unit,
Keech Hospice Care
The title of this book sums up its contents well. The book is made up of two parts. The first part is Dr Amery’s handbook and the second part is the Association of Paediatric Palliative Medicine Formulary (2015). Together this could be considered the bible of paediatric palliative care.
The format of the book has been designed so that it is easy to use and the informal writing style makes it easy for anybody to read and understand. Dr Amery’s handbook is split into 15 sections which cover all of the problems commonly faced by health care professionals when caring for children who are dying. Each section is then broken down further to give step by step instructions.
The book is derived from Dr Amery’s empirical research and twenty years experience along with other international contributors along with the available evidence. There is very little research carried out in the field of paediatric palliative care worldwide compared to other areas of medicine. It is a niche subject so bringing these specialists wealth of knowledge and experience together makes it an invaluable resource.
This handbook addresses communication, breaking bad news, playing, to symptom managing and self care. Each chapter has a title How do I… Using chapter six “How do I manage symptoms in children’s palliative care?” as an example will illustrate the format for the whole book as each chapter is structured in the same way.
Part six is the largest chapter, but is still broken down simply to give the answers to any question you may have regarding symptom management. It starts by stating what may already be known and then it moves onto the section with information that may be useful. The first symptom described is pain. Different ways of assessing pain is explored first referring to WHO (2013) Then it moves onto non pharmacological and pharmacological management of pain, the use of opioids and the different types of pain. The chapter carries on the same logical format discussing all other symptoms that may need managing such as seizures, vomiting and anxiety to name a few.
This handbook has been written for any health care professional across the world. Dr Amery has taken culture and different socioeconomic backgrounds into consideration. The handbook will soon become an indispensable tool for all healthcare professionals within the field of children’s palliative care.
2009 – Children’s Palliative Care in Africa (Amery J (Ed) Oxford University Press)
This textbook is being sold through the Oxford University Press, and you can also download it for free as a pdf here as we want to see children’s palliative care develop worldwide.
Children’s Palliative Care in Africa is a textbook that responds to the enormous and growing need for children’s palliative care services in Africa and other resource-poor settings. This comprehensive textbook was the first to be written by practitioners working in Africa, specifically to meet the palliative care needs of children. It provides practical guidance by improving access to, and delivery of, palliative care in this demanding setting. Written by a group with wide experience of caring for children with life-limiting illnesses in Africa, and edited by Dr. Justin Amery, the textbook addresses key palliative care themes, which are crucial to expanding the provision of children’s palliative care.
The book is particularly suitable for:
- Those working with children with HIV/AIDS (for whom palliative care should be an essential part of treatment);
- Those working in the adult palliative care sector (many of whom also care for children);
- Those working in other paediatric and child health specialities.
While the book is primarily aimed at health and social care professionals, and is written with sufficient depth to be of use to specialists, its style is accessible for a range of other people concerned and involved in the care and treatment of children with life-limiting illnesses
Clinical Care Resources
|Safe use of medicines (3rd Edition)||Together for Short Lives||2021|
|A guide to children’s palliative care||Together for Short Lives||2018|
|APPM Master Formulary (5th Edition)||Association of Paediatric Palliative Medicine and Together for Short Lives||2020|
|Basic Symptom Control in Paediatric Palliative Care (10th Edition)||Association of Paediatric Palliative Medicine and Together for Short Lives||2022|
|Caring for a child at end of life – a guide for professionals on the care of children and young people||Together for Short Lives||2019|
|Pain assessment and treatment in children with significant impairment of the central nervous system||American Academy of Paediatrics||2017|
|Management of Seizures in children and young people in the palliative care setting||Association of Paediatric Palliative Medicine||2023|
|Ugandan CPC Clinical Protocols||PcERC||2020|
|Benini F et al. International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS. Journal of Pain and Symptom Management.||2022|
|Children’s Palliative Care Education Standard Framework and Self Audit Tool||2020|
|Standards of practice for pediatric palliative care and hospice||2010|
|EAPC Taskforce. IMPACT: standards for pediatric palliative care in Europe. European Journal of Palliative Care.||2007|
Education and Competencies
|Downing J, Ling J, Benini F, Payne S, and Papadatou D. (2013) EAPC core competencies for education in paediatric palliative care. Report of the EAPC children’s palliative care education task force. EAPC, Italy.||2013|
|Downing J, Ling J, Benini F, Payne S and Papadatou D. (2014) A summary of the EAPC White Paper on core competencies for education in paediatric palliative care. European Journal of Palliative Care. 21(5): 245-249.||2014|
|Neilsen S, Randall D, McNamara K, Downing J. (2021) Children’s palliative care education and training: developing an education standard framework and audit. BMC Med Educ 21:539.||2021|
|Ghoshal A, Talawadekar P, Palleri A, Marston J, Muckaden M. (2018). Impact of educational training in improving skills, practice, attitudes and knowledge of healthcare workers in pediatric palliative care: Children’s palliative care project in the Indian State of Maharashtra.Indian Journal of Palliative Care. 24(4): 411-425.||2018|
|Namisango E, Bristowe K, Murtagh FEM, Downing J, Richard A Powell RA, Atieno M, Abas M, Ali Z, Luyirika EBK, Meiring M, Mwangi-Powell FNM, Higginson IJH, and Harding R. (2022) Face and content validity, acceptability, feasibility and implementability of a novel outcome measure for children with life-limiting or life-threatening illness in three sub-Saharan African countries. Palliative Medicine. 36(7): 1140-1153.||2022|
|Coombes L, Bristowe K, Ellis-Smith C, Aworinde J, Fraser LK, Downing J, Bluebond-Langner M, Chambers L, Murtagh FEM, Harding R. (2021) Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality. Quality of Life Research. 30:1803-1832||2021|
|Friedel M, Brichard B, Boonen S, Tonon C, De Terwangne B, Bellis D, Mevisse M, Fonteyne C, Jaspard M, Schruse M, Harding R, Downing J, Namisango E, Degryse JM, Aujoulat I. (2021) Face and content validity, acceptability and feasibility of the adapted version of the Children’s Palliative Outcome Scale: A Qualitative Pilot Study, Journal of Palliative Medicine 24(2):181-188.||2021|
|Namisango E, Bristowe K, Murtagh FE, Downing J, Powell RA, Abas M, Haufiku D, Guma S, Luyirika EBK, Mwangi-Powell FN, Higginson IJ, Harding R. (2020). Towards person-centred quality care for children with life-limiting and life-threatening illness: Self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study. Palliative Medicine 34(3):319-335.||2020|
|Namisango E, Bristowe K, Allsop MJ, Murtagh FEM, Abas M, Higginson IJ, Downing J, Harding R. (2019) Symptoms and concerns among children and young people with life-limiting and life-threatening conditions: A systematic review highlighting meaningful health outcomes. The Patient-Patient Centered Outcomes Research 12:15-55.||2019|
|Downing J, Namisango E, Harding R (Annals of Palliative Medicine 2018)
Outcome measurement in paediatric palliative care: lessons from the past and future developments Annals of Palliative Medicine 7(Suppl 3):S151-S163
|Bausewein C, Daveson BA, Currow DC, Downing J, Delians L, Radbruch L, Defilippi K, Lopes Ferreira P, Costanini M, Harding R and Higginso IJ. (2015) EAPC White Paper on outcome measurement in palliative care: Improving practice, attaining outcomes and delivering quality services – Recommendations from the European Association for Palliative Care (EAPC) Task Force on Outcome Measurement. Palliative Medicine30(1):6-22.||2015|
|Downing J, Atieno M, Powell RA, Ali Z, Marston J, Meiring M, Ssengooba J, Williams S, Mwangi-Powell FN, Harding R and the APCA AIDSTAR Project Advisory Group. (2012) Development of a palliative care outcome measure for children in sub-Saharan Africa: findings from early phase instrument development. European Journal of Palliative Care. 19(6) 292-295||2012|
Perinatal Palliative Care
|Clarke P et al. Delivery room cuddles for extremely preterm babies and parents: concept, practice, safety, parental feedback. Acta Paediatrica.||2022|
|Marlow N et al. End-of-life decisions in neonatal care: a conversation analytical study. Arch Dis Child Fetel Neonatal. Ed.||2020|
|BAPM. Perinatal Management of Extreme preterm Birth before 27 weeks of gestation.||2019|
|Together for Short lives. A Perinatal Pathway for Babies with Palliative Care Needs.||2017|
|National Association of Neonatal Nurses. Palliative and End-of-life Care for Newborns and Infants. Position Statement||2015|
|Laddie J et al. Withdrawal of ventilatory support outside the intensive care unit: guidance for practice. Arch Dis Child.||2014|
CPC and Covid
|Bustamante LM, Okhuysen-Cawley R, Downing J, Connor SR, Muckaden MR, Phillips M, Icaza A, Garzon N, Nakashima Y, Morgan K, Mauser S and Grunauer M. (2022). The COVID-19 Pandemic: Early Ripple Effects in Pediatric Palliative Care. Children 9:642||2022|
|McNeil MJ, Kaye EC, Vedaraju Y, Baker JN, Devidas M, Downing J, Graetz D, Ranadive R, Rosenberg AR, Wiener L and Weaver MS. (2021) Global Experiences of Pediatric Palliative Care Teams During the First 6 Months of the SARS-CoV-2 Pandemic. Journal of Pain and Symptom Management. 62(3) e91-99.||2021|
|ICPCN, WHPCA, IAHPC. Palliative care, COVID-19 and Universal Health Coverage Report||2020|
CPC Short Films
|Palliative Care Stories – Palliative Care Australia||Ep 1 – What is your paediatric palliative care story?
Ep 2 – The worst thing a health professional said to you?
Ep 3 – Did you ever make a complaint?
Ep4 – Were there health professionals who stood out, and why?
Ep 5 – What do you know now that you wish you had known before?
Ep6 – Given what you have been through how do you keep going?
Ep 7 – What do you say following the death of a child?
Ep 8 – What is the best thing someone has done for you?
Ep 9 – If you were Health Minister for a day, what would you do?
Ep 10 – What do you want the world to know about your child?