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.
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.
This book presents the current state of the nursing science in topics relevant to the care of pediatric oncology patients and their families across the treatment trajectory and is framed within a precision health framework. The spectrum of topics covered is wide, including, for example, symptom management, self-care management, exercise and physical activity, family-centered care, palliative care, the role of the nurse in treatment decision making, patient and nurse resiliency, survivorship, and genetic counseling. Throughout, there is a focus on the implications of research for nursing practice, highlighting which elements of the available evidence are ready for translation into practice and which are not. In addition, careful attention is paid to the role that nursing can play in further advancing science through clinical research. The authors are leading experts from across the globe. The book will be of special interest for pediatric oncology nurses, including direct care nurses, research nurses, and nursing leaders, and will also be a stimulating source for researchers and non-oncology nurses.
In our society's aggressive pursuit of cures for cancer, we have neglected symptom control and comfort care. Less than one percent of the National Cancer Institute's budget is spent on any aspect of palliative care research or education, despite the half million people who die of cancer each year and the larger number living with cancer and its symptoms. Improving Palliative Care for Cancer examines the barriersâ€"scientific, policy, and socialâ€"that keep those in need from getting good palliative care. It goes on to recommend public- and private-sector actions that would lead to the development of more effective palliative interventions; better information about currently used interventions; and greater knowledge about, and access to, palliative care for all those with cancer who would benefit from it.
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 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.
Like the ground-breaking first edition, Pediatric Psycho-oncology, Second edition puts the child at the centre of medical and psychological care. It broadens the focus beyond treatment and cure to consider the quality of life of the child and their family. Written by an international group of pediatric oncologists and psychologists/psycho-oncologists brought together by an expert editorial team, it focuses on the real-life practical aspects of children undergoing treatment for cancer. This edition has been restructured and opens with a major section on Active treatment, which includes chapters addressing quality of life, pain, psychosocial aspects of treatment and interventions, art therapy and different fantasy-based techniques, palliative care, communication and education, as well as a new chapter on psychopharmacology. Shorter sections then discuss survivorship and care of the dying child, including a new chapter on bereavement. The final section comprises new chapters on ethical considerations and on addressing the emotional needs of children whose parents have cancer, as well as a case study on international collaboration. An appendix provides a comprehensive overview of tools for evaluation and assessment in pediatric psychooncology. This book is a highly practical resource that will be invaluable for all health care professionals looking after children and adolescents with cancer.
The new global cancer data suggests that the global burden has risen to 18.1 million new cases per year and 9.6 million cancer deaths per year. A number of factors appear to be driving this increase, in particular, a growing and aging global population and an increase of exposure to cancer risk factors linked to social and economic development. For rapidly-growing economies, the data suggests a shift from poverty- or infection-related cancers to those associated with lifestyles more typical in industrialized countries. There is still large geographical diversity in cancer occurrence and variations in the magnitude and profile of the disease between and within world regions. There are specific types of cancer that dominate globally: lung, female breast and colorectal cancer, and the regional variations in common cancer types signal the extent to which societal, economic and lifestyle changes interplay to deferentially impact on the profile of this most complex group of diseases. Unfortunately, despite advances in cancer care, a significant proportion of patients at home, experience sub-optimal outcomes. Barriers to successful treatment outcomes include, but are not limited to: access to oncologists in the primary health centers, non-adherence, lack of experienced oncology and palliative care nurses in the community, inadequate monitoring and the lack of training of family and pediatric physicians. Telemedicine approaches, including telephone triage/education, telemonitoring, teleconsultation and status tracking through mobile applications, have shown promise in further improving outcomes, in particular for chronic cancer patients following their hospitalization. Lessons can be learned from existing hospices in North America, the United Kingdom, Australia, Centers of Excellence in African (Uganda) and modern community services in India (Kerala). An important goal of this book is to describe and encourage professionals to develop new community programs in palliative care, which include training and empowering physicians and nurses in the community on the principles of palliative care. The Middle East Cancer Consortium (MECC) together with the American Society of Clinical Oncology (ASCO) and the American Oncology Nursing Society (ONS) have conducted multiple courses ranging from basic palliative care to more specialized training in palliative care for multiple nationalities in Europe, Asia and Africa. Our experience clearly indicates that, to promote such activities, one needs strong leadership and confirmed political will to support the endeavor. The new book will emphasize the importance of having a core of multiple stakeholders including community leaders, government, NGOs and media to be actively involved in advocating for the cause and generating public awareness. This text will provide the reader with a comprehensive understanding of the outside-of-the-hospital treatment of cancer patients by medical, paramedical and volunteer personnel. In doing so, this text will encourage the creation of new palliative care services improving upon the existing ones and stimulate further research in this field. Part 1 of the text will begin with an overview of the current state of affairs of services provided to cancer patients while being cared for by primary health centers. It will also review the current literature regarding medical and psychological-based therapy options in the community for cancer patients at different stages of their disease. Part 2 will address the unique role of the community nurse, within the framework of the multidisciplinary team treating the patient, in the attempt to provide optimal evaluation and care in very challenging situations (such as with terminal patients). Part 3 will provide insightful models of this new discipline and serve as a valuable resource for physicians, nurses, social workers and others involved in the care of cancer patients. The book will take a multidisciplinary approach, integrating clinical and environmental data for practical management to enhance the efficacy of treatment while relieving suffering. Part 4 will also discuss the application of modern technological approaches to track symptoms, quality of life, diet, mobility, duration of sleep and medication use (including pain killers) in chronic cancer patients in the community. Part 5 of the book will also be devoted to modes of developing a collaborative program between governmental and non-governmental organization sectors. This includes volunteer workers in close collaboration with medical professionals for providing emotional and spiritual support, nursing care, nutritional support and empowering family caregivers. Such a model makes palliative care in the community a “people’s movement”, thus transferring part of the responsibility and ownership to the community.
Palliative care provides comprehensive support for severely affected patients with any life-limiting or life-threatening diagnosis. To do this effectively, it requires a disease-specific approach as the patients’ needs and clinical context will vary depending on the underlying diagnosis. Experts in the field of palliative care and oncology describe in detail the needs of patients with advanced cancer in comparison to those with non-cancer disease and also identify the requirements of patients with different cancer entities. Basic principles of symptom control are explained, with careful attention to therapy for pain associated with either the cancer or its treatment and to symptom-guided antineoplastic therapy. Complex therapeutic strategies for palliative cancer patients are highlighted that involve both cancer- and symptom-directed options and address a range of therapeutic aims. Issues relating to drug use in palliative cancer care are fully explored, and a separate section is devoted to care in the final phase. A range of organizational and policy issues are also discussed, and the book concludes by considering likely future developments in palliative care for cancer patients. Palliative Care in Oncology will be of particular interest to palliative care physicians who are interested in broadening the scope of their disease-specific knowledge, as well as to oncologists who wish to learn more about modern palliative care concepts relevant to their day-to-day work with cancer patients.
