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Dying and Disabled Children by Harold M. Dick,David Price Roye Jr.,Penelope R. Buschman,Austin H. Kutscher,Boris Rubinstein,Frances K. Forstenzer Pdf
In this sensitive and compassionate look at terminally ill and disabled children, professionals from the medical community examine the stresses faced by their parents and siblings. They address the crucial element of communication--within a family and between health care providers and family members--in dealing with a child’s serious illness. Ethical decision making, learning to recognize the child’s suffering, and talking to children about death are honestly and clearly discussed. Experts offer direct interventions to help family members through the grieving process once a child has died.
Am I Going to Die? by Sheila Hollins,Irene Tuffrey-Wijne Pdf
This book tells the story of John, who has an intellectual disability. John is dying. The pictures follow him in his illness and his final days. They are designed to help the reader make sense of what is happening to them or someone they know who is ill. The pictures help them to ask questions or share their concerns.
I Have a Question about Death by Arlen Grad Gaines,Meredith Englander Polsky Pdf
Death is a difficult topic for any parent or educator to explain to a child, perhaps even more so when the child has Autism Spectrum Disorder or other Special Needs. This book is designed specifically to help children with these additional needs to understand what happens when someone dies. The first book of its kind, I Have a Question about Death uses straightforward text and images to walk children through what it means when someone dies, as well as ways they might want to react or to think about the person. Using clear illustrations throughout and with information for parents and guardians, this book is essential for families with a child aged 5-11 with Autism Spectrum Disorder or other special needs.
Though there has been much written about dying and bereavement in recent years, the particular stress of terminal illness in childhood - as it affects both the families and the professionals - is only beginning to be better understood. In this book Dorothy Judd, a child psychotherapist who has worked with ill, disabled and dying children and adolescents for many years, places her clinical experience in the context of a full understanding of death, the moral and ethical issues raised by some of the treatments for life-threatening illness, and the current research into new developments in approaches to terminal illness. At the heart of the book is a very moving diary of Judd's work with Robert, a seven-year-old suffering from leukaemia. Judd's account of therapeutic work in the hospital setting, away from the privacy of the consulting room, will be of special interest to mental health professionals. Give Sorrow Words combines great sensitivity to the experience of terminal illness with an astute awareness of the more theoretical debates in this increasingly important area of research.
Dying in America by Institute of Medicine,Committee on Approaching Death: Addressing Key End-of-Life Issues Pdf
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.
Committee on Care at the End of Life,Institute of Medicine
Author : Committee on Care at the End of Life,Institute of Medicine Publisher : National Academies Press Page : 457 pages File Size : 44,9 Mb Release : 1997-10-30 Category : Medical ISBN : 9780309518253
Approaching Death by Committee on Care at the End of Life,Institute of Medicine Pdf
When the end of life makes its inevitable appearance, people should be able to expect reliable, humane, and effective caregiving. Yet too many dying people suffer unnecessarily. While an "overtreated" dying is feared, untreated pain or emotional abandonment are equally frightening. Approaching Death reflects a wide-ranging effort to understand what we know about care at the end of life, what we have yet to learn, and what we know but do not adequately apply. It seeks to build understanding of what constitutes good care for the dying and offers recommendations to decisionmakers that address specific barriers to achieving good care. This volume offers a profile of when, where, and how Americans die. It examines the dimensions of caring at the end of life: Determining diagnosis and prognosis and communicating these to patient and family. Establishing clinical and personal goals. Matching physical, psychological, spiritual, and practical care strategies to the patient's values and circumstances. Approaching Death considers the dying experience in hospitals, nursing homes, and other settings and the role of interdisciplinary teams and managed care. It offers perspectives on quality measurement and improvement, the role of practice guidelines, cost concerns, and legal issues such as assisted suicide. The book proposes how health professionals can become better prepared to care well for those who are dying and to understand that these are not patients for whom "nothing can be done."
When Dad Died by Sheila Hollins,Lester Sireling,Elizabeth Webb Pdf
Cartoon book with a gentle but honest and straightforward approach to death in the family. The authors are both consultant psychiatrists with an interest in grief and bereavement in people of all ages, and especially people with learning disabilities. The story is told in pictures alone to allow for individual interpretation. If you are reading the book with a friend who has a learning disability, try encouraging them to tell the story in their own way. A suggested text is provided at the end for people who prefer a ready made story. The pictures tell the story of the death of a parent in a simple but moving way. The approach is non-denominational, and illustrates a cremation and a burial. Adolescents and adults with learning disability will find the pictures are meaningful with or without the text. Will help to inform readers about the simple facts of death and about feelings of grief. Children without learning disabilities will also appreciate this book which adopts a more direct approach to death than is usual. Will help prepare for and answer questions posed by children for whom the death of someone close is imminent or has occurred.
When Mum Died by Sheila Hollins,Lester Sireling Pdf
When Mum Died takes a gentle, honest and straightforward approach to death in the family. The pictures tell the story of the death of a parent in a simple but moving way. The approach is non-denominational. This book will be helpful to adolescents and adults with intellectual disabilities as well as to their carers and supporters. In addition, children without learning disabilities will continue to appreciate these books, which adopt a more direct approach to death than usual.
'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.
Psychosocial Aspects of Disability by Noreen M. Glover-Graf, RhD, CRC,Michael J. Millington, PhD, CRC Pdf
"What a marvelous and amazing textbook. Drs. Marini, Glover-Graf and Millington have done a remarkable job in the design of this highly unique book, that comprehensively and very thoughtfully addresses the psychosocial aspects of the disability experience. These highly respected scholars have produced a major work that will be a central text in rehabilitation education for years to come." From the Foreword by Michael J. Leahy, Ph.D., LPC, CRC Office of Rehabilitation and Disability Studies Michigan State University "This is an excellent book, but the best parts are the stories of the disabled, which give readers insights into their struggles and triumphs." Score: 94, 4 Stars--Doody's Medical Reviews What are the differences between individuals with disabilities who flourish as opposed to those who never really adjust after a trauma? How are those born with a disability different from individuals who acquire one later in life? This is the first textbook about the psychosocial aspects of disability to provide students and practitioners of rehabilitation counseling with vivid insight into the experience of living with a disability. It features the first-person narratives of 16 people living with a variety of disabling conditions, which are integrated with sociological and societal perspectives toward disability, and strategies for counseling persons with disabilities. Using a minority model perspective to address disability, the book focuses on historical perspectives, cultural variants regarding disability, myths and misconceptions, the attitudes of special interest and occupational groups, the psychology of disability with a focus on positive psychology, and adjustments to disability by the individual and family. A wealth of counseling guidelines and useful strategies are geared specifically to individual disabilities. Key Features: Contains narratives of people living with blindness, hearing impairments, spinal cord injuries, muscular dystrophy, polio, mental illness, and other disabilities Provides counseling guidelines and strategies specifically geared toward specific disabilities, including "dos and don'ts" Includes psychological and sociological research relating to individual disabilities Discusses ongoing treatment issues and ethical dilemmas for rehabilitation counselors Presents thought-provoking discussion questions in each chapter Authored by prominent professor and researcher who became disabled as a young adult
No one is ever prepared to lose a child. It is the most painful loss any parent can ever experience. But when that child is developmentally disabled, the trauma is compounded. It becomes complicated grief. Kalila Smith is a Certified Gestalt & NLP Therapist and author who experienced first hand such a loss when her daughter, Stephanie, died unexpectedly at only twenty-nine years old. Finding no resources for parents who had lost special needs children,she set out to help herself and others find peace and healing after such a traumatic loss.
Institute of Medicine,Board on Health Sciences Policy,Committee on Palliative and End-of-Life Care for Children and Their Families
Author : Institute of Medicine,Board on Health Sciences Policy,Committee on Palliative and End-of-Life Care for Children and Their Families Publisher : National Academies Press Page : 713 pages File Size : 47,7 Mb Release : 2003-02-09 Category : Medical ISBN : 9780309084376
When Children Die by Institute of Medicine,Board on Health Sciences Policy,Committee on Palliative and End-of-Life Care for Children and Their Families Pdf
The death of a child is a special sorrow. No matter the circumstances, a child's death is a life-altering experience. Except for the child who dies suddenly and without forewarning, physicians, nurses, and other medical personnel usually play a central role in the lives of children who die and their families. At best, these professionals will exemplify "medicine with a heart." At worst, families' encounters with the health care system will leave them with enduring painful memories, anger, and regrets. When Children Die examines what we know about the needs of these children and their families, the extent to which such needs areâ€"and are notâ€"being met, and what can be done to provide more competent, compassionate, and consistent care. The book offers recommendations for involving child patients in treatment decisions, communicating with parents, strengthening the organization and delivery of services, developing support programs for bereaved families, improving public and private insurance, training health professionals, and more. It argues that taking these steps will improve the care of children who survive as well as those who do notâ€"and will likewise help all families who suffer with their seriously ill or injured child. Featuring illustrative case histories, the book discusses patterns of childhood death and explores the basic elements of physical, emotional, spiritual, and practical care for children and families experiencing a child's life-threatening illness or injury.
On July 4th 2013, Connor Sparrowhawk, also known as Laughing Boy or LB, was found dead in a specialist NHS unit. Connor, who had autism and epilepsy, had a seizure while in the bath and no member of staff was on hand to stop him from drowning. An entirely preventable death. Sara Ryan presents a frank, sometimes funny and touching account of her son's early life and preventable death and the unfolding #JusticeforLB campaign. This serves as a wake-up call to all of us and asks: can we really claim that we respect the life and dignity of learning disabled people?
Whether a death is sudden or anticipated, losing a loved one shakes us to our very core, destroying our belief in a just, safe, and predictable world. Grief often changes us quickly both physically and mentally. It is like being kidnapped and suddenly transported to a foreign land without luggage, a passport, or the language to make sense of what's happening. Even if you have a road map for getting through the pain and anguish, you still have to take the trip. The purpose of this book is to help you find threads of hope that will assist your recovery and help you carry on. By sharing inspirational stories, personal experiences, and professional advice from contributors to theOpen to Hope website, we trust that you will be comforted and inspired by learning how others dealt with their losses, what they saw as roadblocks, and how they handled them as well as what it has taken for them to not only survive, but thrive. We want to help you resume leading the life that you were meant to live--a life of satisfaction and one driven by a belief in your own personal power for change.
