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The Collaborative for Palliative Care ("Collaborative") is a grassroots consortium of public and private organizations that came together in 2005 for the purposes of studying the increasing need for palliative care and the methods for such care. It has grown from a small fledgling group to a membership of over 50 community-based organizations and volunteers dedicated to improving care of the seriously ill through education, research and advocacy. The Collaborative bridges policy, research and practice in its initiatives and vision for the future. Partners in Palliative Care examines specific areas of concern that the Collaborative has addressed in its education programs and advocacy, as well as the collaborative processes that have been so successful in building community assets. Areas of concentration have been diverse and include advance care planning, relational communication paradigms, community capacity building, the role of culture and spirituality in palliative care, the meaning of pain and suffering for seriously ill individuals, and the ethics of health care costs in palliative and end-of-life systems of care. This book was originally published as a special issue of the Journal of Social Work in End-of-Life and Palliative Care.
This open access book aims to provide a comprehensive but practical overview of the knowledge required for the assessment and management of the older adult with or at risk of fragility fracture. It considers this from the perspectives of all of the settings in which this group of patients receive nursing care. Globally, a fragility fracture is estimated to occur every 3 seconds. This amounts to 25 000 fractures per day or 9 million per year. The financial costs are reported to be: 32 billion EUR per year in Europe and 20 billon USD in the United States. As the population of China ages, the cost of hip fracture care there is likely to reach 1.25 billion USD by 2020 and 265 billion by 2050 (International Osteoporosis Foundation 2016). Consequently, the need for nursing for patients with fragility fracture across the world is immense. Fragility fracture is one of the foremost challenges for health care providers, and the impact of each one of those expected 9 million hip fractures is significant pain, disability, reduced quality of life, loss of independence and decreased life expectancy. There is a need for coordinated, multi-disciplinary models of care for secondary fracture prevention based on the increasing evidence that such models make a difference. There is also a need to promote and facilitate high quality, evidence-based effective care to those who suffer a fragility fracture with a focus on the best outcomes for recovery, rehabilitation and secondary prevention of further fracture. The care community has to understand better the experience of fragility fracture from the perspective of the patient so that direct improvements in care can be based on the perspectives of the users. This book supports these needs by providing a comprehensive approach to nursing practice in fragility fracture care.
Learn to interact with families in ways that promote family functioning when a family member is dying. Family-Based Palliative Care is an insightful book that aims to increase professionals’understanding of the family as client. Authoritative contributors who are experienced in working with the terminally ill present the most current theory, practice, and research related to family-based care of hospice patients. Each readable chapter includes a wealth of information that can be applied to health care settings in which holistic care is a priority. The first chapter presents a conceptual framework for caring for families of the terminally ill as well as clinical examples that are used to illustrate the application of the framework in practice. Experts describe four research studies--two qualitative studies that examine sources of stress for caregivers and identify the resources used by families to manage at home; a methodological study that explores the positive and negative aspects of family caregiving; and a case study that evaluates a hospice staff’s efforts in providing family- based care. Because little research has been done with family caregivers of terminally ill hospice patients, Family-Based Palliative Care will be essential reading for nurses, social workers, hospice staff, and other professionals whose job it is to care for the dying and their families.
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.
Written by a Macmillan lecturer, this comprehansive handbook demonstrates the application of theory to good practice, offering practical guidance to anyone involved with the care of dying people and their families.
Crossing Over provides a unique view of patients, families, and their caregivers striving together to maintain comfort and hope in the face of incurable illness. The narratives weave together emotions, physical symptoms, spiritual concerns, and the stresses of family life, as well as the professional and personal challenges of providing hospice and palliative care. Based on a vast amount of participant-observation and in-depth interviews, Crossing Over moves far beyond dry technical manuals for symptom control, and tired clichés about death with dignity, to depict the sights, sounds, tastes, and smells of the daily in patients homes and the palliative care unit. It captures the breathtaking diversity of people's aspirations and ideals as they face death, and the views of the professionals who care for them. Anger and fear, tenderness and reconciliation, jealousy and love, social support and falling through the cracks, unexpected courage and unshakable faith-- all of these are part of facing death in late twentieth-century North America, and this book brings them to life in an extraordinary portrait of the processes of giving and receiving palliative care.
Palliative care is the interdisciplinary specialty focused on improving quality of life for people with serious illness and their families. This interdisciplinary care is provided by doctors, nurses, social workers, chaplains and others who work together with the patient's other doctors to provide an extra layer of support. Such care is appropriate for people at any age and at any stage in a serious illness, and can be provided together with curative treatment to address clinical, emotional, psychosocial and spiritual concerns of the patient and their family. To better understand how the principles of palliative care can be integrated into the overall provision of care and services to those facing serious illness, the Roundtable on Quality Care for People with Serious Illness held a public workshop in April 2017. This publication summarizes the presentations and discussions from the workshop.
'Social Aspects of Care' provides an overview of financial and mental stress illness places, not just on the patient, but on the family as well. This volume contains information on how to support families in palliative care, cultural considerations important in end-of-life care, sexuality and the impactof illness, planning for the actual death, and bereavement.
This book provides an unique resource for registered nurses working in hospice palliative care at home and for the community, outside of acute care settings and also incorporates literature related to palliative care in acute health care settings, as part of the overall services and supports required. Very few resources exist which specifically address hospice palliative care in the home setting, despite the fact that most palliative care occurs outside acute care settings and is primarily supported by unpaid family caregivers. An overview of the concerns for individuals and families, as well as specific nursing interventions, from all ages would be an excellent support for nursing students and practicing registered nurses alike. The book structure begins with a description of the goals and objectives of hospice palliative care and the nursing role in providing excellent supportive care. Chapters include research findings and specifically research completed by the authors in the areas of pediatric palliative care, palliative care for those with dementia, and the needs of family caregivers in bereavement. Interventions developed by the editors are provided in this book, such as the “Finding Balance Intervention” for bereaved caregivers; the “Reclaiming Yourself” tool for bereaved spouses of partners with dementia; and The Keeping Hope Possible Toolkit for families of children with life threatening and life limiting illnesses. The development and application of these theory-based interventions are also highlighted. Videos and vignettes written by family caregivers about what was helpful for them, provide a patient-and family-centered approach./div The book will benefit nursing students, educators and practicing registered nurses by providing information, theory, and evidence from research.