The Textbook of Interdisciplinary Pediatric Palliative Care, by Drs. Joanne Wolfe, Pamela Hinds, and Barbara Sourkes, aims to inform interdisciplinary teams about palliative care of children with life-threatening illness. It addresses critical domains such as language and communication, symptoms and quality of life, and the spectrum of life-threatening illnesses in great depth. This comprehensive product takes a first-of-its-kind team approach to the unique needs of critically ill children. It shows how a collaborative, interdisciplinary care strategy benefits patients and their families. If you deal with the complex care of critically ill children, this reference provides a uniquely integrated perspective on complete and effective care. Respect interdisciplinary perspectives, and provide the most comprehensive care. Use an integrated approach to address the physical, psychological, social, and spiritual needs of children and their families. Understand and heed your strengths and vulnerabilities in order to provide the best care for your patients. Recognize the necessity of linking hospital-based palliative care with community resources. Implement consistent terminology for use by the entire palliative care team. Access the full text online with regular updates and supplemental text and image resources.
Pediatric palliative care is a field of significant growth as health care systems recognize the benefits of palliative care in areas such as neonatal intensive care, pediatric ICU, and chronic pediatric illnesses. Pediatric Palliative Care, the fourth volume in the HPNA Palliative Nursing Manuals series, highlights key issues related to the field. Chapters address pediatric hospice, symptom management, pediatric pain, the neonatal intensive care unit, transitioning goals of care between the emergency department and intensive care unit, and grief and bereavement in pediatric palliative care. The content of the concise, clinically focused volumes in the HPNA Palliative Nursing Manuals series is one resource for nurses preparing for specialty certification exams and provides a quick-reference in daily practice. Plentiful tables and patient teaching points make these volumes useful resources for nurses.
There are few things requiring more expertise, delicacy, and compassion than caring for an infant, child, or young adult with a life-limiting condition. Written by leading researchers, clinicians from relevant disciplines, family members, and advocates, this practical guide provides professionals involved in pediatric palliative and end-of-life care with comprehensive information in a single volume. Thoroughly updated and expanded, this edition includes chapters addressing the unique challenges facing children with HIV/AIDS and their families, care in home and ICU settings, difficult decision-making processes, and the importance of communication with the child and family, as well as completely new chapters on spiritual dimensions of care and educational and advocacy initiatives. Intended for primary care physicians, pediatric practitioners and specialists, home care and hospice personnel, pastoral counselors, and affected families, the book includes useful resource and reference material and practical, hands-on tips. With contributions from an international group of expert educators, clinicians, and parents, this book takes a truly interdisciplinary approach to pediatric palliative care, presenting best practices, clear instruction, and the latest information and research for anyone involved in pediatric palliative and end-of-life care.
Pediatric Palliative Care: A Model for Exemplary Practice lays out a road map for health-care providers interested in optimizing care for seriously ill children and their families. Grounded in clinical practice and the study of positive rather than problematic encounters between providers and parents, the book presents an evidence-based model of exemplary interaction. The chapters offer a clear understanding of the complex, holistic process of interaction between providers and parents, as well as the personal and professional knowledge and skills needed to interact in optimal ways. This is a one-of-a-kind guidebook for health-care providers interested in (re)discovering how to maximize positive outcomes for both families and providers. It is also a valuable source of inspiration for educators, supervisors, and hospital administrators who want to facilitate personal and professional development and create supportive environments for students, providers, seriously ill children, and their families.
The first volume in the "What Do I Do Now?: Palliative Care" series, Pediatric Palliative Care uses a case-based palliative care approach to cover common and important topics in the examination, investigation, and management of children with serious illness. Each chapter provides a discussion of the diagnosis, key points to remember, and selected references for further reading. The book addresses a wide range of topics, including the goals of care, symptom management, care for neonatal and adolescent populations, and the emotional, social, cultural and spiritual needs of ill children and their families. Written by authors from a variety of fields such as nursing, chaplaincy, social work, and psychology, this book is suited for pediatricians, palliative care and hospice providers, nurses, and allied health practitioners. Pediatric Palliative Care is an engaging collection of thought-provoking cases which clinicians can utilize when they encounter difficult patients. The volume is also a self-assessment tool that tests the reader's ability to answer the question, "What do I do now?"
Interdisciplinary Pediatric Palliative Care provides a uniquely integrated, comprehensive resource about palliative care for seriously ill children and their families. The field of palliative care is based on the fundamental principle that an interdisciplinary team is optimal in caring for patients and their families throughout the illness trajectory. The text integrates themes including goals of care, discipline-specific roles, cultural and spiritual considerations, evidence-based outcomes, and far more. It emphasizes the value of words and high-quality communication in palliative care. Importantly, content acknowledges challenging periods between team members, and how those can ultimately benefit team, patient, and family care outcomes. Each chapter includes the perspective of the family of a seriously ill child in the form of a vignette to promote care team understanding of this crucial perspective. This second edition is founded on a wealth of evidence that reflects the innovations in pediatric palliative care science over the past 10 years, including initiatives in clinical care, research, and education. Interdisciplinary Pediatric Palliative Care is appropriate for all pediatric palliative clinicians (PPC), including physicians, nurses, psychosocial clinicians, chaplains, and many others. All subspecialists who deliver care to seriously ill children, will find this book a must-have for their work. Advance Praise for Interdisciplinary Pediatric Palliative Care, Second Edition "This new edition is as much a testament to pediatric palliative care's remarkable evolution as a field as it is a quintessential playbook for providing the high-quality holistic and compassionate care that families with seriously ill children desperately want. Every page thoughtfully weaves together how interprofessional teams can contribute collaboratively to learning about and supporting the preferences, needs and priorities of the precious patients and families in their circle of care. It is a must read for all practitioners to enhance their palliative care understanding, appreciation and ability as a foundation for optimizing quality of life in practice." - Rebecca Kirch, JD, Executive Vice President of Policy and Programs, National Patient Advocate Foundation "This book offers a truly contemporary and comprehensive view of the entire field of pediatric palliative care. The focus on social determinants of health, cultural humility, and disparities in care could not be timelier, and the section highlighting conflict and conflict resolution should be required reading. The continued and purposeful inclusion of interdisciplinary clinicians in producing each chapter models the palliative care team itself-an approach in which all voices are necessary as we seek to provide the most compassionate care possible." - Rachel Thienprayoon, MD, MSCS, FAAP, FAAHPM, Associate Professor of Anesthesia, Medical Director, StarShine Hospice and Palliative Care, Cincinnati Children's Hospital Medical Center
The importance of palliative care for children facing life threatening illness and their families is now widely acknowledged as an essential part of care, which should be available to all children and families, throughout the child's illness and at the end of life. The new edition of the Oxford Textbook of Palliative Care for Children brings together the most up to date information, current knowledge, evidence, and developments of clinical practice in the field. The book is structured into four sections. 'Foundations of Care' describes core issues, the foundations on which paediatric palliative care is based. 'Child and Family Care' looks at different aspects of psychological, social, and cultural care for the sick child or young person, and their family. These chapters cover the time course of the illness, around the time of death and support for the bereaved family. 'Symptom Care' focuses on the uses of medication, specific symptoms, and their management. Finally, 'Delivery of Care' examines practical approaches to care in different environments and the needs of clinicians. Two new editors join the team from Canada and South Africa, reflecting our aims to contribute towards the development of care for children across the world, and to be a resource for both experienced clinicians and those new to the field. Comprehensive in scope, exhaustive in detail, and definitive in authority, this third edition has been thoroughly updated to cover new practices, current epidemiological data, and the evolving models that support the delivery of palliative medicine to children. This 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'. This book is an essential resource for anyone who works with children worldwide.
The death of a child is a special sorrow. No matter the circumstances, a child's death is a life-altering experience. Except for the child who dies suddenly and without forewarning, physicians, nurses, and other medical personnel usually play a central role in the lives of children who die and their families. At best, these professionals will exemplify "medicine with a heart." At worst, families' encounters with the health care system will leave them with enduring painful memories, anger, and regrets. When Children Die examines what we know about the needs of these children and their families, the extent to which such needs areâ€"and are notâ€"being met, and what can be done to provide more competent, compassionate, and consistent care. The book offers recommendations for involving child patients in treatment decisions, communicating with parents, strengthening the organization and delivery of services, developing support programs for bereaved families, improving public and private insurance, training health professionals, and more. It argues that taking these steps will improve the care of children who survive as well as those who do notâ€"and will likewise help all families who suffer with their seriously ill or injured child. Featuring illustrative case histories, the book discusses patterns of childhood death and explores the basic elements of physical, emotional, spiritual, and practical care for children and families experiencing a child's life-threatening illness or injury.
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.
Supporting the Child and the Family in Paediatric Palliative Care provides a comprehensive overview of good practice in caring for terminally-ill children, young people and their families. Drawing from extensive personal experiences of working in paediatric palliative care, the author provides guidance on issues including symptom management and pain relief; cultural, religious and spiritual aspects of care; and the role of education for life-limited children. Addressing the importance of individual needs, the book looks at emotional, social and cognitive support at different stages of the illness, how parents and professionals can respond to children's own questions about death, and the impact of life-limiting illness on the whole family - including grandparents and siblings. The material offers helpful suggestions on how to support families in making informed choices during distressing periods, such as where their child will die and how to prepare for the funeral. This book is a practical and invaluable tool for nurses, paediatricians, hospice care staff, bereavement counsellors and all those caring for life-limited children.
