Perspectives On Palliative Care For Children And Young People

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.

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.

'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.

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.

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.

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.

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.

"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.