Perspectives On Palliative Care For Children And Young People
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Perspectives on Palliative Care for Children and Young People by Rita Pfund,Susan Kerry-Fowler Pdf
Advances in medical science and technology are saving the lives of more children worldwide than ever. Some survive and live out a normal life expectancy, others have a life-limiting/life-threatening diagnosis where death may come early, and still others will live on well past projected life trajectories into adulthood. With so many different care pathways, children, parents and communities often find themselves facing challenges for which neither they nor their healthcare systems are prepared. This book opens a global discussion of these issues. Extending Rita Pfund's text Palliative Care Nursing of Children and Young People, it invites paediatric palliative care professionals, parents and children from around the globe to share their knowledge and experience. This book is of vital interest to palliative care professionals, parents, policy makers and academics. It is an important move towards ensuring that all children and their families, regardless of geographical location, gender, ethnicity or socio-economic class have equal and guaranteed access to comprehensive paediatric palliative care services.
'Pediatric Palliative Care', the fourth volume in the 'HPNA Palliative Nursing Manuals' series, addresses paediatric hospice, symptom management, paediatric pain, the neonatal intensive care unit, transitioning goals of care between the emergency department and intensive care unit, and grief and bereavement in paediatric palliative care.
Perspectives on Palliative Care for Children and Young People by Rita Pfund Pdf
Advances in medical science and technology are saving the lives of more children worldwide than ever. Some survive and live out a normal life expectancy, others have a life-limiting/life-threatening diagnosis where death may come early, and still others will live on well past projected life trajectories into adulthood. With so many different care pathways, children, parents and communities often find themselves facing challenges for which neither they nor their healthcare systems are prepared. This book opens a global discussion of these issues. Extending Rita Pfund's text Palliative Care Nurs.
Palliative Care Nursing of Children and Young People by Rita Pfund Pdf
Challenges the reader to critically analyze their own practices and beliefs within an evidence-based framework. This book captures the evidence base and many developments and applies them to the care of infants, children, and young people living with life-limiting illness, and their families.
Death, Dying and Palliative Care in Children and Young People by Alison M. Rodriguez Pdf
Death, Dying and Palliative Care in Children and Young People: Perspectives from Health Psychology examines the issues relevant to children and young people living with serious illness and their families by taking a closer look at the literature and knowledge around the processes of care, health, well-being and development through a health psychology lens. The text introduces readers to the general palliative and holistic care needs of children and young people along with the nuances of caring relationships. The chapters discuss the vulnerabilities encountered in living with serious illness and facing a shortened life prognosis, being at the end of life, and issues relative to the historical concept of the ‘good death’ or ‘dying well’, grief, and bereavement. The author examines how individual and familial experiences can be multi-layered, which can consequently influence perceptions and behaviours. The text therefore offers a deep exploration of the varied ways in which people draw on different resources to navigate their palliative care lived experiences. The book will be beneficial to the students of, and individuals interested in, psychology and nursing along with other health and social care courses. It will further be of interest to individuals interested in gaining more understanding of the experiential aspects of death, dying and palliative care in children and young people from health psychology perspectives.
Pediatric Palliative Care: Global Perspectives by Caprice Knapp,Vanessa Madden,Susan Fowler-Kerry Pdf
The first of its kind, this book describes pediatric palliative care in more than 23 countries. Each region in the world is covered and countries included are both resource poor and rich. Authors are multidisciplinary and regarded nationally and internationally in their field. Clinicians, advocates, policymakers, funders, and researchers will learn how programs were developed and implemented in each country. Authors describe children for whom pediatric palliative care is needed and provided for in their country. When applicable, a brief history of pediatric palliative care is included noting especially policy changes and legislative acts. For example, the chapter on Poland describes how pediatric palliative care grew from the Catholic church into a national movement spearheaded by several health care workers. The Pole national spirit that brought them through a change in political regime has also been a driving force in the pediatric palliative care movement. The chapter on South Africa, for example, illustrates how a resource poor country has been able to leverage philanthropic and government funding to make its dream of having an infrastructure of pediatric palliative care a reality. These are just a few examples of the inspiring stories that are included in this book. Readers from countries who wish to start a pediatric palliative care program, or advance an existing program, will learn valuable lessons from others who have faced similar barriers. Introduction and concluding chapters highlight the strengths and weaknesses of the modern pediatric palliative care movement.
Palliative Care Nursing of Children and Young People by Rita Pfund Pdf
"Children's palliative care is an evolving specialty and as such our knowledge base cannot remain static. This book constantly challenges the reader to critically analyze their own practices and beliefs within an evidence-based framework and as such makes a valuable contribution to the growing body of knowledge on this important subject." - Susan Fowler-Kerry, in the Foreword. This book caters for readers from different working environments and levels of experience. It is ideal for paediatric nurses with no specialist palliative care knowledge, and also for palliative care nurses with no specialist paediatric experience. Other healthcare professionals and therapists working with children, young people and their families will also find this book invaluable. It will also be ideal for undergraduate and postgraduate health and social care students, and professionals involved in children's hospices, community services and charity groups. "This book captures not just the rapidly evolving evidence base, but also as many current developments as possible and applies them in a meaningful way to the care of infants, children, and young people living with life-limiting illness, and their families. It offers an overview of contemporary issues and helps to stimulate the type of dialogue that can bring about the actions that will make a real difference for the children, young people and families in our care." - Rita Pfund, in the Preface.
Dying in America by Institute of Medicine,Committee on Approaching Death: Addressing Key End-of-Life Issues Pdf
For patients and their loved ones, no care decisions are more profound than those made near the end of life. Unfortunately, the experience of dying in the United States is often characterized by fragmented care, inadequate treatment of distressing symptoms, frequent transitions among care settings, and enormous care responsibilities for families. According to this report, the current health care system of rendering more intensive services than are necessary and desired by patients, and the lack of coordination among programs increases risks to patients and creates avoidable burdens on them and their families. Dying in America is a study of the current state of health care for persons of all ages who are nearing the end of life. Death is not a strictly medical event. Ideally, health care for those nearing the end of life harmonizes with social, psychological, and spiritual support. All people with advanced illnesses who may be approaching the end of life are entitled to access to high-quality, compassionate, evidence-based care, consistent with their wishes. Dying in America evaluates strategies to integrate care into a person- and family-centered, team-based framework, and makes recommendations to create a system that coordinates care and supports and respects the choices of patients and their families. The findings and recommendations of this report will address the needs of patients and their families and assist policy makers, clinicians and their educational and credentialing bodies, leaders of health care delivery and financing organizations, researchers, public and private funders, religious and community leaders, advocates of better care, journalists, and the public to provide the best care possible for people nearing the end of life.
Palliative Care in Pediatric Oncology by Joanne Wolfe,Barbara L. Jones,Ulrika Kreicbergs,Momcilo Jankovic Pdf
This textbook is the first to focus on comprehensive interdisciplinary care approaches aimed at enhancing the wellbeing of children with cancer and their families throughout the illness experience. Among the topics addressed are the epidemiology of pediatric cancer distress, including physical, emotional, social, and spiritual dimensions; the role of the interdisciplinary team; communication and advance care planning; symptom prevention and management; care at the end of life; family bereavement care; and approaches to ease clinician distress. The contributing authors are true experts and provide guidance based on the highest available level of evidence in the field. The book has not only an interdisciplinary but also an international perspective; it will appeal globally to all clinicians caring for children with cancer, including physicians, nurses, psychosocial clinicians, and chaplains, among others.
Richard Hain,Ann Goldman,Adam Rapoport,Medical Director Paediatric Advanced Care Team (Pact) Adam Rapoport,Michelle Meiring
Author : Richard Hain,Ann Goldman,Adam Rapoport,Medical Director Paediatric Advanced Care Team (Pact) Adam Rapoport,Michelle Meiring Publisher : Oxford University Press Page : 535 pages File Size : 48,6 Mb Release : 2021-03-24 Category : Medical ISBN : 9780198821311
Oxford Textbook of Palliative Care for Children by Richard Hain,Ann Goldman,Adam Rapoport,Medical Director Paediatric Advanced Care Team (Pact) Adam Rapoport,Michelle Meiring Pdf
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.
Textbook of Interdisciplinary Pediatric Palliative Care E-Book by Joanne Wolfe,Pamela Hinds,Barbara Sourkes Pdf
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.
Interdisciplinary Pediatric Palliative Care by Joanne Wolfe,Pamela S. Hinds,Barbara M. Sourkes Pdf
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
Children’s Palliative Care: An International Case-Based Manual by Julia Downing Pdf
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.
Ethical and Philosophical Aspects of Nursing Children and Young People by Gosia M. Brykczynska,Joan Simons Pdf
Nurses and healthcare professionals are constantly faced with ethical and philosophical dilemmas when working with children in everyday practice. Ethical and Philosophical Aspects of Nursing Children and Young People is a comprehensive text on the ethics and philosophy behind paediatric nursing that reflects the contemporary issues encountered while working with children and young people. The title provides a philosophical and historical analysis of the subject, looking at a review of sociological and political theories concerning the nature of childhood, and providing a critical analysis of contemporary notions about childhood. It then goes on to look at moral theories and their application to paediatric nursing practice, ethical issues when caring for children of all ages, from infancy to adolescence. It considers issues of disabled children, confidentiality, mental health issues, children's rights, and pain management. With case studies and activities throughout, this book will enable students and newly qualified nurses both to understand philosophical concepts and issues but also to articulate their own reflections and observations on these subjects. Written by children's nurses for children's nurses With contributions from internationally recognised experts in the field Reflective scenarios, further reading, extensive referencing, case studies, guided questions, and resources throughout Includes appendices on the RCPCH Guidelines on Withdrawal of Treatment, the ICN Ethical Code, the Summary of the UNCRC, and the RCPCH Guidelines for the Conduct of Ethical Research
