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

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On behalf of the International Childrens Palliative Care Network (ICPCN), I am pleased to commend this global resource to any individual or organisation working in the field of childrens palliative care. It has been thoughtfully curated and compiled, bringing together the well-respected expertise of leading international childrens palliative care (CPC) clinicians who continue to champion the delivery of CPC knowledge sharing across the world.

It is authored and edited with great energy and intent and is positioned authentically within the scaffolding of ICPCNs mission toachieve the best quality of life for children and young people with life-limiting conditions, their families and carers worldwide. In addition, it is a demonstrable practical and accessible resource for the CPC worldwide community that furthers the mission of ICPCN to not only raiseawareness of childrens palliative careand advance theglobal development of childrens palliative care servicesbut most significantly is underpinned by a deep commitment tosharing expertise, skills and knowledge.

It must be acknowledged that this unique offering to readers, as the first case-based manual for global CPC, has only been made possible by the positive international collegiality within the sector that has been strengthening over many decades. ICPCN continues to recognise the tireless work of so many who have been passionately advancing knowledge and resource collaboration globally and their dedication to ensure resources such as this are shared and distributed widely. Indeed, our hope is that a compilation of this nature is globally relevant to both readership and leadership. It is further envisaged that this publication not only serves the audience well in its very practical nature but also it can provide a foundation of inspiration to publish more books of its type for generations to come.

Finally, our belief is that this publication will not only be a crucial piece in the developed and developing countries CPC toolkit but will also make a profound impact to global regions that are underserved by CPC services at this moment in time. Through the expert content delivered with warmth and clarity and its relevance and broad appeal, we hope it will be highly conducive to worldwide distribution and pivotal in strengthening the international collectivism for supporting children with life-limiting conditions and their families.

All involved in bringing this rich resource together, with special mention to ICPCN Chief Executive, Professor Julia Downing, as editor, should be immensely proud of this publication and the contribution it will make to a very dedicated global CPC community.

Board Chair, ICPCN, AustraliaPaul Quilliam

Childrens palliative care (CPC) is an important and developing field globally. The provision of childrens palliative care varies around the world, with provision not meeting needs and over 65% of countries having no recognised CPC service provision. Therefore, the reality is that, whilst there are an estimated 21.1 million children who require palliative care, in many areas of the world CPC has had a poor profile, is unavailable, and children are treated like little adults without their unique needs being recognised or understood. It is therefore essential that we increase capacity for service delivery and expand service provision so that all the children, regardless of where they live, can access affordable and culturally appropriate palliative care. Too many children have been suffering needlessly due to the lack of understanding, knowledge and skills in CPC. As a growing field, evidence is emerging in all aspects of service provision, including clinical care, models of care and education, and it is important that we share this evidence and learn from each other.

Whilst the provision of CPC varies in different regions and countries, the overriding philosophy is the same, with the clear aim of improving quality of life for children and their families. However, due to the resources available, the health systems in which we work and the policies that guide us, the way that we provide care may be different. Regardless of how we provide the care, we need to be focusing on the children and their families, ensuring that we are supporting them holistically, i.e., physically, psychologically, socially and spiritually, ensuring that they are at the centre of the care that we provide.

This book will enable individuals working in CPC globally to learn through engaging in case studies. It will give them the opportunity for real-life learning, learning from each other through case histories from around the world which will draw out many of the key issues and elements of CPC. It provides a practical approach grounded in experience and the appropriate evidence base, and aims to: be practical and accessible to readers; focus on the child and the family throughout; utilise cases from around the world; demonstrate multi-disciplinarity both in terms of provision of care, but also in terms of the teams of authors contributing to the book, with each chapter being authored by a mix of individuals from low/middle and high income countries; have an international perspective, with real-life cases being presented from a wide range of countries and situations, presented by experienced international CPC practitioners; integrate physical, psychological, social and spiritual care throughout the cases, demonstrating care across a range of ages and conditions and is one of the first books on CPC to address the concepts of Serious Health-related Suffering (SHS) from the Lancet Commission report, and Universal Health Coverage (UHC).