The ICPCN Charter sets out the International standard of support that is the right of all children living with life limiting or life threatening conditions and their families.
The Charter can be downloaded here and is available in a range of languages. If it is not available in your language and you would like to assist in translation please contact us at communications@icpcn.org
Children’s Palliative Care: An International Case-Based Manual
Edited by: Julia Downing
ISBN: 978-0-620-51623-5
Price: ebook – £31.99 softcover book – £39.99
Sold by Springer
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).
Palliative Care – Celebrating Nurses’ Contributions
This report was led by ICPCN and published by ICPCN, IAHPC and WHPCA in 2021 in recognition of the International Year of the Nurse and Midwife in 2020. Launched on World Health Day in 2021 it highlights the work of 27 nurses, some working in low- and middle-income countries, some in high income settings, some developing services, others working in humanitarian settings, some in clinical care, some in education, research, academia and advocacy.
Nurses play a key role in the provision of palliative care globally, and during the International Year of the Nurse and Midwife in 2020, we wanted to recognise this and celebrate their work. As we work to continue developing and strengthening palliative care, we have had the privilege of meeting nurses around the world working in the field, some who are newly qualified and full of enthusiasm, others who are nearing the end of their careers and are keen to pass on their knowledge and skills.
This report is a celebration of the pivotal role of nurses in palliative care across the globe. We hope that it will also serve as an inspiration to policymakers, health care administrators, and managers to support nurses so they can have a more prominent voice in health policymaking, education, and care provision.
The children’s palliative care provider of the future: A blueprint to spark, scale and share innovation
This policy report sets out an optimistic vision of what a world-class provider of children’s palliative care (CPC) could look like in the future. It proposes nine key features through which providers can innovate to improve access and quality over time, drawing on best practice and trends as described by 50 CPC service leaders in 27 countries, as well as insights from other healthcare sectors. Recognising that there is huge variation among CPC providers and the systems they work in, this ‘blueprint’ is intended for inspiration and challenge, not prescription.
In addition to key areas for future innovation it also highlights many areas in which CPC providers are already exemplars within the healthcare sector. CPC leaders and other stakeholders are invited to reflect on the opportunities the blueprint describes and how their own organisations might benefit from pursuing these.
The report was developed by Imperial College London’s Institute for Global Health Innovation, with the support of Mais Research Center. It was produced in association with ICPCN, Global Treehouse Foundation., Helix Centre, Isabella Seragnoli Foundation, Masi Family Office Innovation Centre, ORTO Impact and Fondazione AIS.
Palliative Care, COVID-19 and Universal Health Coverage Report
Based on a survey conducted in June 2020, this report provides recommendations to governments to integrate palliative care into COVID-19 responses, train health care workers in palliative care and build back better through the integration of palliative care into health systems, including through Universal Health Coverage reforms. It is a moral imperative to ensure that adults and children are not experiencing avoidable serious health related suffering during the COVID-19 pandemic which could be alleviated through access to integrated and cost-effective palliative care. The survey was undertaken by ICPCN, WHPCA and PallCHASE.
Touching Rainbows – Acknowledging the Child’s Voice in Palliative Care
Edited by: Julia Downing and Sue Boucher
ISBN: 978-0-620-51623-5
Price: US$25 (including 5$ postage and packaging per copy)
“Man is born with rainbows in his heart and you’ll never read him unless you consider rainbows.”
Carl Sandburg
Touching Rainbows: Acknowledging the Child’s Voice in Palliative Care is an ICPCN publication in which children and family members of children living with life threatening or life limiting conditions, and sometimes their carers, share a slice of their difficult journey with great courage, honesty and openness. This is done through stories, poems, artwork and pictures.
These inspiring stories come from across the world and, where possible, have been written in the writer’s own language with an English translation. It is hoped they will touch and enrich the lives of many, encourage those travelling a similar path, and instil a sense of courage and joy, despite the many challenges and heartaches that come with this journey. These children and their families pass through many storms and dark days, but still somehow manage to aspire to reach out for the promise and beauty of the rainbow.
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Research into the need for children’s palliative care
Assessment of the Need for Palliative Care for Children
Three country report: South Africa, Kenya and Zimbabwe – completed in 2013
In November 2013, UNICEF and ICPCN launched the results of a collaborative research project to quantify the need for children’s palliative care in three sub-Saharan countries – Kenya, South Africa and Zimbabwe.
The Report “Assessment of the Need for Palliative Care for Children. Three Country Report: South Africa, Kenya and Zimbabawe” was the first study to look at the prevalence of life-limiting illness and life-threatening conditions in countries in the developing world and compare this with the coverage of palliative care services, to identify the gap between them, and develop a methodology that can be used to estimate the global need.
The knowledge that so many children are suffering needlessly and dying in pain and so few children have access to palliative care services in these countries is something that should steel every one of us to action. This important research provides us not only with evidence of the enormous need but also a methodology that can be used by other countries to calculate their own needs and gaps in services.
By adapting the methodology used in this study, researchers can assess the need for children’s palliative care services in every country which will in turn lead to a clearer and more accurate picture of the global need for children’s palliative care.
Downing JD, Adjetey Appiah A, Ask K, Chante ST, Eves E, Tysoe F, Glennon C, Krishnasam M, Milanti A, Philips J, Power J, So WKW, Yates P. (2023) Position Statement on Cancer Nursing Leadership. Cancer Nursing 46(2) 85-91
Benini F, Pappadatou D, Bernada M, Craig F, De Zen L, Downing J, Drake R, Freidrichsdorf S, Garros D, Giacomelli L, Lacerda A, Lazzarin P, Marceglia S, Marston J, Mukaden MA, Papa S, Parravicini E, Pellegatta F, Wolfe J. (2021) International standards for pediatric palliative care: from IMPaCCT to GO-PPaCS. Journal of Pain and Symptom Management. 63(5): e529-e543.
Downing J, Ambler J, Brand T, Nakawesi J. (2021) El niño con VIH/SIDA In: Medicina Palliative en Ninos y Adolescentes. Asrudilo W, Astigarraga I, Salinas A, Mendinueta C, Navajas A, D’Souza C and Jassal SS (Eds.). Paliativos Sin Fronteras.
Knaul F, Radbruch L, Connor S, de Lima L, Arreola-Ornelas H, Mendez Carniado O, Jiang Kwete X, Bhadelia A, Downing J, Krakauer EL. (2020) Chapter 2: How many adults and children are in need of palliative care worldwide?. In Connor S (Ed). Global Atlas of Palliative Care 2nd Edition. London. 17-32.
Clark D, Centeno C, Clelland D, Garralda E, Lopwz-Fidalo J, Downing J, Varghese C, Connor S. (2020) Chapter 4: How are palliative care services developing worldwide to address the unmet need for care? In Connor S (Ed). Global Atlas of Palliative Care 2nd Edition. London. 45-58.
Connor S, Downing J, de Lima L. (2020) Chapter 6: What are the available resources at global/regional levels to support palliative care policies, programmes and research in low-middle income countries. In. Connor S (Ed). Global Atlas of Palliative Care 2nd Edition.London. 82-91.
Downing J. (2017) Education and Curriculum Development in Children’s Palliative Care. In Talawadekar (Ed). Children’s Palliative Care Handbook 2nd Edition. India.
Boucher S, Downing J, Shemilt R. (2016) The Role of Play in Children’s Palliative Care.Children. In: Navidid U(Ed) The Role of Play in Children’s Health and Development. Printed Edition of the Special Issue Published in Children. MDPI, Switzerland.
Mwangi-Powell FN, Downing J, Powell RA, Kiyange F, and Ddungu H, (2015) Chapter 76: Palliative care in Africa. In; Ferrell BR, Coyle N, Paice JA, Oxford Textbook of Palliative Nursing Fourth Edition. Oxford University Press, Oxford, UK.
Downing J, Ambler J, Brand T, Nakawesi J. (2015) Les soins palliatifs a L’intention des enfants ayant le VIH & SIDA In: Medicine Palliative chez les enfants et adolescents. Asrudilo W, Astigarraga I, Salinas A, Mendinueta C, Navajas A, D’Souza C and Jassal SS (Eds.). Paliativos Sin Fronteras.
Downing J, Nakawesa J and Kiwanuka R. (2012) Paediatric Palliative Care in Uganda In Knapp C, Madden V and Fowler-Kerry S. Paediatric Palliative Care: Global Perspectives. Springer, New York, p 41-64.
Downing J and Milicevic N (Eds). (2014) Palijativno zbrinjavnje dece.Projekat Ministarstva zdravlja I Evropske unije “Razvoj palijativnog zbrinjavanja u Srbiji”. Beograd, Serbia.
Boucher S and Downing J. (2011) Touching rainbows: Acknowledging the child’s voice in palliative care. ICPCN South Africa. ISBN 978-0-620-51623-5
Prior to 2010
Amery J (Editor) (2009) Children’s Palliative Care in Africa. Oxford University Press, London. Can be downloaded from this website
Amery J (Editor) A Really Practical Handbook of Children’s Palliative Care. Lulu.com Can be downloaded from this website