Informal Caregivers From Hidden Heroes To Integral Part Of Care

This book builds on the current trends in informal caregivers’ role in the supportive care of cancer patients (as well as other diseases) across the care continuum covering topics from the healthcare professionals and the users’ perspectives. Informal caregivers are a critical resource to their care recipients and an essential component of the health care system. The book introduces a comprehensive view of the topic and acknowledges the importance and the complexity of caregiving. Here lays one of the uniqueness of this book, which highlights the areas and the ways that for example interventions in specific settings/groups of patients can actually facilitate the caregiving process. The increasing number of care-dependent people, the adoption of the principle “outpatient before inpatient”, the shift of care from inpatient to outpatient and the preference for home care (i.e. majority) are only some of the reasons that contributed to Informal caregiving becoming a central feature of the health care landscape and will become even more prominent in the decades ahead. The book draws on the experts’ high-end, current systematic research evidence and real-life examples on these topics to provide an insightful perspective on undertaking research within this context, and to demonstrate informal caregivers’ impact on patients’ outcomes. The structure of the book provides multiple perspectives to the topic and makes it appealing to a wide range of recipients including the nursing community, clinicians, social workers, researchers, policy makers, technology experts as well as postgraduate students especially to those practicing specifically in supportive care in cancer. The book fills a gap in this field of expertise not only by familiarizing the reader with a wide range of topics to be considered but it also emphasizes on what the developments in the field in the future would need to take into consideration. Finally, current and future studies can be informed from the practices of preceding studies that are incorporated in the book.

Becoming a caregiver is increasingly an inevitable experience for many people and, therefore, a likely life transition. Drawing on research and personal experiences of working with family caregivers, this book examines a range of family caregiving situations from across the life course. It seeks to capture the dynamics of caregiving in a number of common situations: caregiving during infancy, for adults who acquire a disability through accidents or illness, for older people with age-related issues, and caregiving by children and adolescent carers and grandparent carers. In drawing attention to key moments of vulnerability faced by family and informal caregivers, and by suggesting how to assist ‘reconnection’ at these moments, the book provides a guide for those working in the area of health, disability and care. Informal care is conceptualised as occurring with the context of personal interrelationships, these being nested within wider kin networks and linked with wider professional formal care networks. Informal care is seen both as an expression of social capital and as an activity that builds social capital. It is an indicator of resources of mutual support within social networks, and it has the effect of adding to the stock of social resources. The book makes a case, therefore, for facilitating the development of social capital by strengthening the capacity of informal caregivers and caregiver groups, and by improving the linkages with formal care organisations.

"Sponsored by the Elizabeth Dole Foundation."

The United States faces a growing crisis in care. The number of people needing care is growing while the ranks of traditional caregivers have shrunk. The status of care workers is a critical concern. Evelyn Nakano Glenn offers an innovative interpretation of care labor in the United States by tracing the roots of inequity along two interconnected strands: unpaid caring within the family; and slavery, indenture, and other forms of coerced labor. By bringing both into the same analytic framework, she provides a convincing explanation of the devaluation of care work and the exclusion of both unpaid and paid care workers from critical rights such as minimum wage, retirement benefits, and workers' compensation. Glenn reveals how assumptions about gender, family, home, civilization, and citizenship have shaped the development of care labor and been incorporated into law and social policies. She exposes the underlying systems of control that have resulted in womenÑespecially immigrants and women of colorÑperforming a disproportionate share of caring labor. Finally, she examines strategies for improving the situation of unpaid family caregivers and paid home healthcare workers. This important and timely book illuminates the source of contradictions between American beliefs about the value and importance of caring in a good society and the exploitation and devalued status of those who actually do the caring.

Family caregiving affects millions of Americans every day, in all walks of life. At least 17.7 million individuals in the United States are caregivers of an older adult with a health or functional limitation. The nation's family caregivers provide the lion's share of long-term care for our older adult population. They are also central to older adults' access to and receipt of health care and community-based social services. Yet the need to recognize and support caregivers is among the least appreciated challenges facing the aging U.S. population. Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. This report also assesses and recommends policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults.

"While much has been written about the role of caregiving for the elderly and chronically ill and for children with special needs, little is known about "military caregivers" -- the population of those who care for wounded, ill, and injured military personnel and veterans. These caregivers play an essential role in caring for injured or wounded service members and veterans. This enables those for whom they are caring to live better quality lives, and can result in faster and improved rehabilitation and recovery. Yet playing this role can impose a substantial physical, emotional, and financial toll on caregivers. This report summarizes the results of a study designed to describe the magnitude of military caregiving in the United States today, as well as to identify gaps in the array of programs, policies, and initiatives designed to support military caregivers. Improving military caregivers' well-being and ensuring their continued ability to provide care will require multifaceted approaches to reducing the current burdens caregiving may impose, and bolstering their ability to serve as caregivers more effectively. Given the systematic differences among military caregiver groups, it is also important that tailored approaches meet the unique needs and characteristics of post-9/11 caregivers."--Abstract

This is a timely book, given the increasing emphasis on user participation in both research and health and social service provision, that can be read in conjunction with a more general book on research..."David Hicks, Liverpool John Moores University, UK User participation in research is still in its relative infancy with many practical, ethical, moral, methodological and philosophical questions unanswered. This text gathers together an international set of authors to explore these issues and begin to forge some practical solutions to each of these concerns. The book includes contributions on the use and application of narrative approaches, intervention and evaluation research, methodological development and quality thresholds. It provides a practical framework for all groups wishing to undertake research based on the principles and values of user participation. The book is structured around ten original case studies which explore the use of participatory methods in practice with a variety of groups across diverse health, social care and community settings. These include older people, including those with dementia, people with learning disability, mental health service users and their carers, and children and young people. Unique and often groundbreaking studies from Australia, Sweden, the UK, and the USA are used to illustrate application of theory to research practice. In addition the text: Considers the issues, challenges and rewards of user participation research Draws on the actual experience of doing research and working with users Includes the voices and contributions of users in reporting research User Participation in Health and Social Care Research: Voices, Values and Evaluationis key reading for students, researchers, practitioners and users themselves wishing to undertake participative research involving service users.

A palliative care doctor on the front lines of hospital care illuminates one of the most important and controversial ethical issues of our time on his quest to transform care through the end of life. It is harder to die in this country than ever before. Statistics show that the vast majority of Americans would prefer to die at home, yet many of us spend our last days fearful and in pain in a healthcare system ruled by high-tech procedures and a philosophy to "fight disease and illness at all cost." Dr. Ira Byock, one of the foremost palliative-care physicians in the country, argues that end-of-life care is among the biggest national crises facing us today. In addressing the crisis, politics has trumped reason. Dr. Byock explains that to ensure the best possible care for those we love-and eventually ourselves- we must not only remake our healthcare system, we must also move past our cultural aversion to talking about death and acknowledge the fact of mortality once and for all. Dr. Byock describes what palliative care really is, and-with a doctor's compassion and insight-puts a human face on the issues by telling richly moving, heart-wrenching, and uplifting stories of real people during the most difficult moments in their lives. Byock takes us inside his busy, cutting-edge academic medical center to show what the best care at the end of life can look like and how doctors and nurses can profoundly shape the way families experience loss. Like books by Atul Gawande and Jerome Groopman, The Best Care Possible is a compelling meditation on medicine and ethics told through page-turning, life or death medical drama. It is passionate and timely, and it has the power to lead a new kind of national conversation.