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

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.

Auteur
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.

Contenu
Chapter 1. Introduction to children's palliative care and serious health related suffering, along with how to use this case based manualProf Julia Downing ICPCNThis chapter will introduce the philosophy of children's palliative care, the concept of Serious Health related Suffering (SHS) as introduced in the Lancet Commission report in October 2017. This chapter is introductory in nature and so it is not anticipated that it will revolve around a case study, although case examples may be utilised to illustrate the concepts, and to demonstrate how this case based manual should be used.

Chapter 2. The need for and gaps in provision of children's palliative care globallyProf Julia Downing - ICPCNDr Stephen Connor, Dr Lorna FraserThere is great variety globally with regards to the need for and accessibility to children's palliative care services. This chapter will introduce this disparity and through case examples will demonstrate some of the differences, and the strengths and challenges for CPC provision globally.
Chapter 3. Universal Health Coverage and Serious Health related Suffering (SHS)
Prof Julia Downing - ICPCN, Dr MG Rajagopal - India, Dr Liliana de Lima USA/ Columbia, Prof Felicia KnaullUHC and SHS are important concepts for the ongoing development and advocacy for children's palliative care globally. Through the use of a case study, these concepts will be demonstrated along with the implications for children's palliative care and what this will mean for service provision in different parts of the world.
Chapter 4. Children's palliative care across a range of conditions, settings and resourcesLizzie Chambers, Dr Megan Doherty, Regina Okhuysen-Cawley Palliative care should be provided across a range of settings, such as home care, hospital care, hospice care etc. Through the use of a complex case study, that takes the child and their family through these different settings, this concept and the provision of palliative care in each setting will be explored, highlighting the principles that should be applied regardless of the resources available. The issue of the provision of palliative care for children with a range of conditions, and not just cancer will also be explored, along with access to care
Chapter 5. The importance of good holistic assessmentBusi Nkosi South Africa, Dr Jane Nakawesi Uganda Doctor - UKGood assessment is key to good management and care. Through a case study, readers will be taken through the important steps in assessment, how to manage when the child is unable to speak for themselves, what to do when test and scans aren't available, how to ensure a multi-disciplinary assessment is carried out, what conclusions can be drawn from the assessment, and how to ensure that a holistic assessment process is carried out, that will have a direct impact on the care provided.
Chapter 6. Communication to children and their familiesSue Boucher South Africa, Maha Atout Jordan, Katrina Macnamara GoodgerAlongside assessment, good communication skills, and knowing how to communicate with children and their families difficult and challenging concepts, prognosis etc is essential in the provision of children's palliative care. Through the use of a case study readers will learn about key communication skills, how to utilise play and toys in communication, how to break bad news, communicate difficult concepts and encourage open and honest communication within the family, thus avoiding collusion and the 'elephant in the room'.
Chapter 7. Pain assessment and managementDr Stefan FriedrichsdorfEach of these chapters (7-8-9-10) will utilised a different case study to equip readers to manage different types of symptoms encountered in children's palliative care. It will not be an exhaustive list, but readers will learn the principles behind symptom management which can be applied in different settings, and will learn the principles behind the management of different symptoms. The case studied will develop such that the initial symptoms become more complex and more challenging to manage, and examples of ...