Download or read book Dying and Disabled Children written by Harold M. Dick and published by Routledge. This book was released on 2014-02-25 with total page 170 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Death Or Disability written by Dominic Wilkinson and published by Oxford University Press. This book was released on 2013-01-24 with total page 320 pages. Available in PDF, EPUB and Kindle. Book excerpt: Dominic Wilkinson combines philosophy, medicine, and science to explore the profound and contentious ethical issues facing those who work with critically ill children and infants. He addresses questions about the accuracy of predictions for future quality of life; about when to allow children to die; and about how much say parents should have.
Download or read book I Have a Question about Death written by Arlen Grad Gaines and published by Jessica Kingsley Publishers. This book was released on 2017-03-21 with total page 40 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Global Report on Birth Defects written by Arnold L. Christianson and published by . This book was released on 2006 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Every year an estimated 7.9 million children -- 6 percent of total births worldwide -- are born with a serious birth defect of genetic or partially genetic origin. Additional hundreds of thousands more are born with serious birth defects of post-conception origin, including maternal exposure to environmental agents (teratogens) such as alcohol, rubella, syphilis, and iodine deficiency that can harm a developing fetus. Serious birth defects can be lethal. For those who survive, these disorders can cause lifelong mental, physical, auditory or visual disability. Data presented in this report show that at least 3.3 million children under five years of age die from birth defects each year and an estimated 3.2 million of those who survive may be disabled for life. Birth defects are a global problem, but their impact is particularly severe in middle- and low-income countries than in high-income countries because of sharp differences in maternal health and other significant risk factors, including poverty, a high percentage of older mothers, a greater frequency of consanguineous marriages and survival advantage against malaria for carriers of sickle cell, thalassemia, and glucose-6-phosphate dehydrogenase (G6PD) deficiency genes. This report identifies for the first time the sever, and previously hidden, toll of birth defects, highlighting the extent of this serious and vastly underappreciated public health problem. The accompanying database in Appendix B (separate file) provides the first systematic, country-by-country summary of annual births of infants with specific serious birth defects of genetic or partially genetic origin.
Download or read book Coping with Crisis and Handicap written by Aubrey Milunsky and published by Springer Science & Business Media. This book was released on 2012-12-06 with total page 427 pages. Available in PDF, EPUB and Kindle. Book excerpt: For over 20 years I have accepted the challenge and had the privilege of caring for sick children, agonizing with their parents during periods of serious illness, which were sometimes fatal. Because of my particular interest in and concern about birth defects and genetic disease, many of these children had severe disabling handicaps, which were often genetic and included mental retardation. Hence care of these children and their families was often complicated by the presence of serious or profound genetic defects. The initial realization of the nature of the disorder invariably led to emotional . difficulties and inevitably later spawned chronic distress. For some children inexorable deterioration led to untimely deaths, while the parents agonized over their handi capped, chronically ill, or defective-but nevertheless loved---
Download or read book What Do We Tell the Children written by Joseph M. Primo and published by Abingdon Press. This book was released on 2013-09-17 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt: 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."
Download or read book Dying in America written by Institute of Medicine and published by National Academies Press. This book was released on 2015-03-19 with total page 470 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Planning for the Future written by L. Mark Russell and published by . This book was released on 2006 with total page 603 pages. Available in PDF, EPUB and Kindle. Book excerpt: A handbook of information for parents as they plan for their child's life after their own deaths. Easy to understand, describes step-by-step all of the elements that parents must consider to provide a happy and fulfilling life for their child with a disability--Cover.
Download or read book Scapegoat written by Katharine Quarmby and published by Granta Books. This book was released on 2011-06-02 with total page 198 pages. Available in PDF, EPUB and Kindle. Book excerpt: Every few months there's a shocking news story about the sustained, and often fatal, abuse of a disabled person. It's easy to write off such cases as bullying that got out of hand, terrible criminal anomalies or regrettable failures of the care system, but in fact they point to a more uncomfortable and fundamental truth about how our society treats its most unequal citizens. In Scapegoat, Katharine Quarmby looks behind the headlines to question and understand our discomfort with disabled people. Combining fascinating examples from history with tenacious investigation and powerful first person interviews, Scapegoat will change the way we think about disability - and about the changes we must make as a society to ensure that disabled people are seen as equal citizens, worthy of respect, not targets for taunting, torture and attack.
Download or read book Autism and Loss written by Sarah Broadhurst and published by Jessica Kingsley Publishers. This book was released on 2007-10-15 with total page 211 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Open to Hope written by Gloria Horsley and published by Open to Hope. This book was released on 2018-08-15 with total page 416 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Farewell My Forever Child written by Kalila Smith and published by . This book was released on 2013-07-01 with total page 134 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Give Sorrow Words written by Dorothy Judd and published by Routledge. This book was released on 2019-06-21 with total page 302 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Am I Going to Die written by Sheila Hollins and published by RCPsych Publications. This book was released on 2009 with total page 116 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book in the Books Beyond Words series is based on the " Veronica Project ", a study of people with learning disabilities, ten of whom were terminally ill. The story in this book draws on their experiences of what was important for them when they were ill and dying [...] This book is designed for people with learning disabilities whos health is deteriorating and who are going to die. They could have cancer, or Alzheimer's disease, or any other illness that shortens their life. This is also a guide for supporters. Supporters are the people whom individuals trust and feel safe with when they are ill. Supporting someone who is terminally ill is very demanding [...] This book will help people to give the person good support [...] [Ed., introd.]
Download or read book Parents Perception of Their Adult Developmentally Disabled Children s Understanding of Death written by Jennifer Joy Kuekes and published by . This book was released on 1996 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book Pediatric Palliative Care written by Betty Ferrell and published by . This book was released on 2016 with total page 161 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Lifetimes written by Bryan Mellonie and published by Bantam. This book was released on 2009-09-16 with total page 42 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
