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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.
Winner of a Moonbeam Children's Book Award 2017 I Have a Question about... is a 2018 Winner of the Moonbeam Children's Book Award Silver Medal for Best Book Series - Non-Fiction Death is a difficult topic for any parent or educator to explain to a child, perhaps even more so when they are autistic or have 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 who need to talk about death with any child aged 5-11.
One out of seven children will lose a parent before they are 20. The statistics are sobering, but they are also a call for preparedness. However, pastors and counselors of all types are often at a loss when dealing with a grieving child. Talking to adults about death and grief is difficult; it's all the more challenging to talk to children and teens. The stakes are high: grieving children are high-risk for substance abuse, promiscuity, depression, isolation, and suicide. Yet, despite this, most of these kids grow up to be normal or exceptional adults. But their chance to become healthy adults increases with the support of a loving community. Supporting grieving children requires intentionality, open communication, and patience. Rather than avoid all conversations on death or pretend like it never happened, normalizing grief and offering support requires us to be in-tune with kids through dialogue as they grapple with questions of “how” and “why.” When listening to children in grief, we often have to embrace the mystery, offer love and compassion, and stick with the basics. The author says, "We don’t have to answer the why and how for them, but we can assure our children that God is with us as we suffer. We can do so by doing good for others and pointing out all of those moments when someone has done something good for us. I believe that most of the time that’s as far as we will get, and that is okay."
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.
When a loved one dies, children are faced with a kaleidoscope of feelings, thoughts, and questions. Struggling with these issues can be overwhelming without guidance, support, and creative forms of expression. This bereavement book contains simple, effective activities to help children and parents communicate about death and the grieving process. Through these activities, children will learn how to grow and thrive after the loss of a loved one.
People with autism often experience difficulty in understanding and expressing their emotions and react to losses in different ways or in ways that carers do not understand. In order to provide effective support, carers need to have the understanding, the skills and appropriate resources to work through these emotional reactions with them. Autism and Loss is a complete resource that covers a variety of kinds of loss, including bereavement, loss of friends or staff, loss of home or possessions and loss of health. Rooted in the latest research on loss and autism, yet written in an accessible style, the resource includes a wealth of factsheets and practical tools that provide formal and informal carers with authoritative, tried and tested guidance. This is an essential resource for professional and informal carers working with people with autism who are coping with any kind of loss.
Brain disordersâ€"neurological, psychiatric, and developmentalâ€"now affect at least 250 million people in the developing world, and this number is expected to rise as life expectancy increases. Yet public and private health systems in developing countries have paid relatively little attention to brain disorders. The negative attitudes, prejudice, and stigma that often surround many of these disorders have contributed to this neglect. Lacking proper diagnosis and treatment, millions of individual lives are lost to disability and death. Such conditions exact both personal and economic costs on families, communities, and nations. The report describes the causes and risk factors associated with brain disorders. It focuses on six representative brain disorders that are prevalent in developing countries: developmental disabilities, epilepsy, schizophrenia, bipolar disorder, depression, and stroke. The report makes detailed recommendations of ways to reduce the toll exacted by these six disorders. In broader strokes, the report also proposes six major strategies toward reducing the overall burden of brain disorders in the developing world.
"This report found that many people with disabilities enter institutions as children and remain there for their entire lives. Most of these institutions visited by Human Rights Watch researchers did not provide for more than people’s basic needs, such as food and hygiene, with scarce contact with the community and little opportunity for personal development. Some residents are tied to their beds and given sedatives to control them."--Publisher website.
Pediatric palliative care is a field of significant growth as health care systems recognize the benefits of palliative care in areas such as neonatal intensive care, pediatric ICU, and chronic pediatric illnesses. Pediatric Palliative Care, the fourth volume in the HPNA Palliative Nursing Manuals series, highlights key issues related to the field. Chapters address pediatric hospice, symptom management, pediatric pain, the neonatal intensive care unit, transitioning goals of care between the emergency department and intensive care unit, and grief and bereavement in pediatric palliative care. The content of the concise, clinically focused volumes in the HPNA Palliative Nursing Manuals series is one resource for nurses preparing for specialty certification exams and provides a quick-reference in daily practice. Plentiful tables and patient teaching points make these volumes useful resources for nurses.
When the death of a relative, a friend, or a pet happens or is about to happen . . . how can we help a child to understand? Lifetimes is a moving book for children of all ages, even parents too. It lets us explain life and death in a sensitive, caring, beautiful way. Lifetimes tells us about beginnings. And about endings. And about living in between. With large, wonderful illustrations, it tells about plants. About animals. About people. It tells that dying is as much a part of living as being born. It helps us to remember. It helps us to understand. Lifetimes . . . a very special, very important book for you and your child. The book that explains—beautifully—that all living things have their own special Lifetimes.