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Increasing End of Life Care Access for Individuals with Intellectual and Developmental Disabilities

Increasing End of Life Care Access for Individuals with Intellectual and Developmental Disabilities
Author: Karen E. Pekarcik
Publisher:
Total Pages: 248
Release: 2012
Genre:
ISBN:
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This descriptive study identified and prioritized resources desired by professionals for inclusion in a toolkit to support access to palliative and end of life care for individuals with intellectual and developmental disabilities (IDD). A non-random sample of 28 medical, palliative care, hospice and case management professionals across four rural northern California counties completed a survey identifying priorities for information to assist in their efforts to identify needs and refer individuals with IDD to palliative and end of life hospice care. Results of the study indicate that the highest priority of information identified by the respondents is information supporting assessment and communication with individuals with intellectual and developmental disabilities. Additionally, the need for information regarding sharing diagnosis, discussing treatment and end of life processes was indicated as pertinent for supporting this population. Implications of the study indicate a need for a social justice and ethics framework to guide social workers to initiate early discussion and promotion of palliative and end of life care, and facilitate person centered planning for individuals with IDD as a means to increase access to services for which they are historically denied.

End of Life and People with Intellectual and Developmental Disability

End of Life and People with Intellectual and Developmental Disability
Author: Roger J. Stancliffe
Publisher: Springer Nature
Total Pages: 542
Release: 2022-06-11
Genre: Psychology
ISBN: 3030986977
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This book on end of life examines how to include people with intellectual and developmental disability in the inevitability of dying and death. Comprising 17 chapters, it addresses challenging and under-researched topics including suicide, do-not-resuscitate, advance care planning, death doulas and accessible funerals. Topics reflect everyday community, palliative care, hospice and disability services. The book proposes that the rights of people with disabilities should be supported up to and after their death. Going beyond problem identification, the chapters offer positive, evidence-supported responses that translate research to practice, together with practice examples and resources grounded in lived experience. The book is applicable to readers from the disability field, and mainstream health professionals who assist people with disability in emergency care, palliative care or end-of-life planning

Health Care for People with Intellectual and Developmental Disabilities across the Lifespan

Health Care for People with Intellectual and Developmental Disabilities across the Lifespan
Author: I. Leslie Rubin
Publisher: Springer
Total Pages: 0
Release: 2016-05-10
Genre: Medical
ISBN: 9783319180953
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This book provides a broad overview of quality health care for people with intellectual and developmental disabilities (IDD). It focuses on providing the reader a practical approach to dealing with the health and well-being of people with IDD in general terms as well as in dealing with specific conditions. In addition, it offers the reader a perspective from many different points of view in the health care delivery system as well as in different parts of the world. This is the 3rd , and much expanded edition, of a text that was first published in 1989 (Lea and Fibiger). The second edition was published in 2006 (Paul Brookes) and has been used as a formal required text in training programs for physicians, nurses and nurse practitioners as well as by administrators who are responsible for programs serving people with IDD. This book is considered the “Bible” in the field of health care for people with IDD since 1989 when the first edition came out.

Dying in America

Dying in America
Author: Institute of Medicine
Publisher: National Academies Press
Total Pages: 470
Release: 2015-03-19
Genre: Medical
ISBN: 0309303133
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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.

Textbook of Palliative Care

Textbook of Palliative Care
Author: Roderick Duncan MacLeod
Publisher: Springer
Total Pages: 0
Release: 2025-05-29
Genre: Medical
ISBN: 9783031489907
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This second edition provides the most up-to-date information on all aspects of palliative care including recent developments (including COVID-19), global policies, service provision, symptom management, professional aspects, organization of services, palliative care for specific populations, palliative care emergencies, ethical issues in palliative care, research in palliative care, public health approaches and financial aspects of care. This new Textbook of Palliative Care remains a unique, comprehensive, clinically relevant and state-of-the art book, aimed at advancing palliative care as a science, a clinical practice and as an art. Palliative care has been part of healthcare for over fifty years but we still needs to be explained. Healthcare education and training has been slow to recognize the vital importance of ensuring that all practitioners have a good understanding of what is involved in the care of people with serious or advanced illnesses and theirfamilies. However, the science of palliative care is advancing and this new edition will contribute to a better understanding of this specialty. This new edition offers 20 new chapters out of over 120, written by experts in their given fields provide up-to-date information on a wide range of topics of relevance to those providing care towards the end of life no matter what the disease may be. We present a global perspective on contemporary and classic issues in palliative care with authors from a wide range of disciplines involved in this essential aspect of care. The Textbook includes sections addressing aspects such as symptom management and care provision, organization of care in different settings, care in specific disease groups, palliative care emergencies, ethics, public health approaches and research in palliative care. This new Textbook will be of value to practitioners in all disciplines and professions where the care of people approaching death is important, specialists as well as non-specialists, in any setting where people with serious advanced illnesses are residing. It is also an important resource for researchers, policy-and decision-makers at national or regional levels. Neither the science nor the art of palliative care will stand still so the Editors and contributors from all over the world aim to keep this Textbook updated so that the reader can find new evidence and approaches to care.

Health Inequalities and People with Intellectual Disabilities

Health Inequalities and People with Intellectual Disabilities
Author: Eric Emerson
Publisher: Cambridge University Press
Total Pages: 177
Release: 2014
Genre: Medical
ISBN: 0521133149
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An authoritative, evidence-based overview of the health needs of people with intellectual disabilities and how to manage these needs appropriately.

Compassionate Communities

Compassionate Communities
Author: Klaus Wegleitner
Publisher: Routledge
Total Pages: 257
Release: 2015-06-26
Genre: Social Science
ISBN: 1317565061
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Compassionate communities are communities that provide assistance for those in need of end of life care, separate from any official heath service provision that may already be available within the community. This idea was developed in 2005 in Allan Kellehear’s seminal volume- Compassionate Cities: Public Health and End of Life Care. In the ensuing ten years the theoretical aspects of the idea have been continually explored, primarily rehearsing academic concerns rather than practical ones. Compassionate Communities: Case Studies from Britain and Europe provides the first major volume describing and examining compassionate community experiments in end of life care from a highly practical perspective. Focusing on community development initiatives and practice challenges, the book offers practitioners and policy makers from the health and social care sectors practical discussions on the strengths and limitations of such initiatives. Furthermore, not limited to providing practice choices the book also offers an important and timely impetus for other practitioners and policy makers to begin thinking about developing their own possible compassionate communities. An essential read for academic, practitioner, and policy audiences in the fields of public health, community development, health social sciences, aged care, bereavement care, and hospice & palliative care, Compassionate Communities is one of only a handful of available books on end of life care that takes a strong health promotion and community development approach.

Patient Safety and Quality

Patient Safety and Quality
Author: Ronda Hughes
Publisher: Department of Health and Human Services
Total Pages: 592
Release: 2008
Genre: Medical
ISBN:
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"Nurses play a vital role in improving the safety and quality of patient car -- not only in the hospital or ambulatory treatment facility, but also of community-based care and the care performed by family members. Nurses need know what proven techniques and interventions they can use to enhance patient outcomes. To address this need, the Agency for Healthcare Research and Quality (AHRQ), with additional funding from the Robert Wood Johnson Foundation, has prepared this comprehensive, 1,400-page, handbook for nurses on patient safety and quality -- Patient Safety and Quality: An Evidence-Based Handbook for Nurses. (AHRQ Publication No. 08-0043)." - online AHRQ blurb, http://www.ahrq.gov/qual/nurseshdbk/

Living with Learning Disabilities, Dying with Cancer

Living with Learning Disabilities, Dying with Cancer
Author: Irene Tuffrey-Wijne
Publisher: Jessica Kingsley Publishers
Total Pages: 274
Release: 2010
Genre: Family & Relationships
ISBN: 1849050279
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Cancer.

Cancer and Cancer Care

Cancer and Cancer Care
Author: Debbie Wyatt
Publisher: SAGE
Total Pages: 1030
Release: 2014-11-30
Genre: Health & Fitness
ISBN: 1473927366
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‘This book creates new ground for all health professionals working in cancer care to read, enjoy, look at and question their practice.’ Caroline Adcock, Clinical Practice Educator – Haematology and Oncology, Royal Shrewsbury Hospital Cancer and Cancer Care is a complete study of cancer, the care of people with the disease and its impact on everyday life. Addressing the physical and psychosocial aspects of the illness in detail, it covers all fundamental aspects of cancer diagnosis, treatment, survival and aspects of psychosocial support for all those affected by cancer: patients, their families, and their healthcare providers. Chapters include: - A review of the latest theory and evidence on over 30 separate topic areas - Reflective questions which challenge readers to reappraise what they have learned - Chapter overviews and chapter summaries which highlight the key points The book is essential reading for all those on cancer care courses at undergraduate and postgraduate level. It will be valuable reading for nurses, oncologists, psychologists, social workers and all healthcare practitioners and researchers working with people affected by cancer.