Chronic childhood disease brings psychological challenges for families and carers as well as the children. Roger Bradford explores how they cope with these challenges, the psychological and social factors that influence outcomes and the ways in which the delivery of services can be improved to promote adjustment. Drawing on concepts from health psychology and family therapy, the author proposes a multi-level model of care which takes into account the child, the family and the wider care system and how they interrelate and influence each other.
Chronic childhood disease brings psychological challenges for families & carers as well as the children. Bradford explores how they cope, the psychological & social factors that influence outcomes, & the ways in which services can be improved.
Written by leading mental health professionals, this warm and accessible parenting book for children with chronic illnesses offers clear, practical guidance for all aspects of the journey. When you're focused on ensuring your child gets the best possible treatments for their symptoms, it's easy to overlook or dismiss the impact the illness can have on your relationships and emotions. This book places your psychological well-being front and center, so you can be the best caregiver possible for your child.
[A] valuable addition to the literature on chronic paediatric illness... The book provides an in depth understanding of the path through chronic illness, illustrating the obvious effects on the child, but also the parents, siblings and the family as a whole across the spectrum from the psychological and social to the physical... There is much to be learnt from this book and it deserves careful reading.' - from the Foreword by Hilton Davis, Emeritus Professor of Child Health Psychology, King's College London Parents of children with chronic illnesses experience 'extreme parenting'. Parenting under extreme circumstances, like an extreme sport, challenges us to find our true strengths, to push ourselves physically and emotionally. This book is a guide and a source of support for parents of children with long-term illnesses. Sharon Dempsey argues that by helping parents to cope with their child's condition we are ultimately helping the child, and that parents are better able to live a full, enjoyable life if they have an awareness of strategies and knowledge to cope with the difficulties of dealing with their child with a chronic illness. The guide is packed with practical advice, models of exploration and lists of action points, and will empower parents to be good advocates for their children. It will also provide health professionals with invaluable insights into the demands of living with chronic illness.
A story of the impact of childhood chronic disease on siblings and families. Each year, thousands of families are faced with the specter of childhood chronic disease. Despite often being labeled as "lucky ones," childhood chronic diseases take a severe toll on the healthy brothers and sisters of the sick child. Feelings of fear, jealousy, resentment and extraordinary responsibility are common among such healthy siblings. These children and young adults can feel emotionally neglected within the family structure. Shadow Child explores all of these impacts in the context of the author's relationship with his younger brother. Shadow Child is the story of the author's personal experience as a healthy sibling of a brother inflicted with Type 1 Diabetes when he was four years old (preceded by Juvenile Rheumatoid Arthritis when he was two). The book focuses on the impact that chronic diseases such as diabetes have on the families of the inflicted child, and explores how various interfamily relationships change due to the introduction of chronic disease.
There has been a significant increase in the prevalence of certain chronic disorders among children and adolescents. For example, health experts warn of an epidemic of diabetes mellitus due to an increase in the sedentary life style and poor nutrition of children. There are many questions still to be addressed in the study of chronic disorders among children and adolescents.What are the risk factors associated with chronic diseases in these populations?What are the major complications that contribute to disability and increased health care utilization and costs? What impact do chronic diseases have on the psychosocial development? What are the most effective diagnostic, treatment,and rehabilitation strategies? How can patient education and self-management activities be improved to help children and adolescents improve compliance with treatment regimens? How can parents and other family members become more involved in assessment and management? In what ways can peers, schools,religious institutions, and other organizations help children and adolescent scope with their chronic disease? This book addresses these questions by focusing on how eight chronic disorders affect health care utilization, costs, coping, and health outcomes in children and adolescents.Research studies are used to illustrate wide range of topics from the epidemiology of chronic diseases in children and adolescents, health care utilization and costs, to treatment outcomes, disability, and family processes.Case studies from a clinical psychologist’s private practice are used to clarify major psychosocial issues underlying chronic diseases in these populations. Chapter One analyzes the epidemiology of eight chronic conditions in children and adolescents. Data on the prevalence of diseases and associated risk factors are stressed in this chapter. Health care planners can use these analyses to improve primary, secondary, and tertiary prevention through more effective uses of health care resources. Chapter Two examines the latest information on health care utilization and costs for children and adolescents that can point to a more efficient means of reducing the rising health care costs associated with the treatment of chronic diseases. In the remaining chapters, the eight chronic diseases are evaluated in terms of five major issues. First, the latest trends in complications associated with each chronic condition are explored.Second, the impact of each disease on disability and psychosocial development of children and adolescents are analyzed. Third, recent research findings on diagnosis,treatment, and rehabilitation strategies are discussed. Fourth, new trends in patient education and self-management are presented. Fifth, each chapter will assess the role of family, peers, schools, and other organizations in helping children and adolescents cope with their chronic disorders. Dr. Mark L. Goldstein, a clinical psychologist, reviews the literature and uses composite case studies from his practice to illustrate the impact of these trends on how children and adolescents manage chronic disease. The information in this book will be relevant to a wide range of professionals and students in the fields of pediatrics, medicine, nursing, public health, mental health, social work,education, health administration, health policy, and social sciences.
Children and young people suffering from long-term conditions require continuing support and nursing care throughout their lives. Nursing Care of Children and Young People with Chronic Illness explores chronic disease management in the context of recent developments, including the National Service Framework for Children. It addresses the aetiology of chronic illness and the impact on the child’s family. It also explores holistic approaches to caring for their social, physical and psychological needs, and highlights the importance of the nurse’s role in promoting children and their parents as ‘expert patients’. Nursing Care of Children and Young People with Chronic Illness is a comprehensive, up-to-date resource for nursing students and practitioners on the context, theory and practice of assessing health needs, and the delivery of holistic care and services within a variety of care settings, to enable them to meet the changing needs of children and young people with chronic illnesses and diseases, and their families. The first nursing-specific text related to the care of children & young people with chronic illness Incorporates case studies & scenarios throughout to enable readers to gain an understanding of the application of concepts & theories in practice Covers care aspects of the child and young person in different settings including tertiary, secondary, primary health care and the home Written in the context of the NSF for Children
Because chronic disorder is becoming an ordinary feature of family life and development, understanding its impact has become critical. This volume, and the conference proceedings it reports, represents a major effort to examine the family's response to chronic physical or psychopathological illness in one or more of its members. Recent data are revising our notions of chronic illness. Evidence is mounting that chronic psychiatric disorders reflect, in part, abnormalities of brain structure and function. In this sense, they are, in part, medical disorders. On the other hand, a number of traditionally labeled medical disorders produce a broad range of psychological symptoms and are exquisitely sensitive to psychosocial influences. Families undergo a complex process of adaptation during which their response to stress and their fundamental beliefs about learning and parenting change. These beliefs endure and are difficult to alter. By examining the processes in a wide range of chronic conditions, this volume helps to identify the common, underlying processes of adaptation. The first three chapters concern the families' responses to disorders that are distinctly medical; the next three focus on families' responses to "grey zone" disorders or anomalies that appear early in life, minor physical anomalies, and communication handicaps; and one chapter focuses exclusively on schizophrenia. The last chapter reflects an effort to develop a model based on the experience of researchers with both psychiatric and medical illness.
Praise for Helping Children and Adolescents with Chronic and Serious Medical Conditions A Strengths-Based Approach "Helping Children and Adolescents with Chronic and Serious Medical Conditionsprovides a wellspring of knowledge, from the theoretical to the clinical. The many vignettes and transcriptions immeasurably enrich the reader's understanding of the interventions and their broader applicability."—Barbara M. Sourkes, PhDJohn A. Kriewall and Elizabeth A. Haehl Director of Pediatric Palliative CareLucile Packard Children's Hospital at Stanford An important and practical guide to providing compassionate care and support to medically compromised children and their families Helping Children and Adolescents with Chronic and Serious Medical Conditions: A Strengths-Based Approach presents practical guidance on integrating the latest research into evidence-based practice to ensure the best client care. Edited by a top scholar in the field, this essential resource contains contributions from renowned specialists in various helping fields. Utilizing an inter-professional perspective, helping professionals will draw from the experiences and expertise of a wide range of medical professionals, providing a "window" into their roles, responsibilities, and challenges, offering the most effective approaches for working with this special population of children and their families. Equipping practitioners with the knowledge and skills needed to encourage children's resilience and help them build their emotional strengths, this book uses a caring yet authoritative tone and discusses: The emotional impact of illness on the individual and the family Child-life practice in hospitals School-based interventions for children and adolescents with medical conditions How to meet the spiritual as well as emotional needs of children with chronic and life-threatening illness With thoughtful coverage of positive helping approaches that encourage family and individual strengths, Helping Children and Adolescents with Chronic and Serious Medical Conditions: A Strengths-Based Approach is an invaluable resource for social workers, teachers, school counselors, and other mental health and medical professionals who work with medically challenged children and adolescents in every setting.
This new book is a practical guide for physicians and other professionals who care for children and adolescents with complex, chronic diseases. These disorders are a challenge because they require multiple services, the information about the disorders are scattered, and the exact treatments are not available in standard texts. To overcome these barriers, this book provides a summary of the clinical features, laboratory diagnosis, and the general and specific treatments needed for optimal care of these children. The key points are presented in a clear, succinct format, providing recommendations that can be implemented within the time span of an office or emergency room visit. Furthermore, pitfalls that are encountered are emphasized and alternatives are suggested. For example, this resource outlines: - Routine and special vaccines that are needed or contraindicated for these children - Interactions between drugs and diseases that could result in surprising adverse effects - Care of medical devices such as gastrostomy tube and nebulizer machine - Specific medical treatment with the appropriate medication dosage - Chronic wound care - Education and rehabilitation recommendations - Patient support groups This book not only provides a disease specific guide, but also instructions for creating a medical home, information on disease-drug interactions, and references for further study.
