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The Impact Of Cystic Fibrosis On The Family
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Book Synopsis Cystic Fibrosis by : David M. Orenstein
Download or read book Cystic Fibrosis written by David M. Orenstein and published by Lippincott Williams & Wilkins. This book was released on 2012-03-28 with total page 788 pages. Available in PDF, EPUB and Kindle. Book excerpt: This one-of-a-kind guide offers easy-to-understand explanations, advice, and management options for patients or parents of patients with cystic fibrosis. The book explains the disease process, outlines the fundamentals of diagnosing and screening, and addresses the challenges of treatment for those living with CF. As one reviewer said, this book “is the only complete answer book for everyone living with the disease. It is an indispensable resource for families of children with CF, adolescent and adult patients, and physicians, nurses, respiratory therapists, and social workers involved in the care of CF patients.”
Download or read book Facts about Cystic Fibrosis written by and published by . This book was released on 1995 with total page 6 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis In the Shadow of Illness by : Myra Bluebond-Langner
Download or read book In the Shadow of Illness written by Myra Bluebond-Langner and published by Princeton University Press. This book was released on 2020-06-30 with total page 321 pages. Available in PDF, EPUB and Kindle. Book excerpt: A revealing account of how families adapt to living with a chronically ill child What is it like to live with a child who has a chronic, life-threatening disease? What impact does the illness have on well siblings in the family? Myra Bluebond-Langner suggests that understanding the impact of the illness lies not in identifying deficiencies in the lives of those affected, but in appreciating how family members carry on with their lives in the face of the disease's intrusion. The Private Worlds of Dying Children, Bluebond-Langner's previous book, now considered a classic in the field, explored the world of terminally ill children. In her new book, she turns her attention to the lives of those who live in the shadow of chronic illness: the parents and well siblings of children who have cystic fibrosis. Through a series of narrative portraits, she draws us into the daily lives of nine families of children at different points in the natural history of the illness—from diagnosis through the terminal phase. In these portraits, as family members talk about their experiences in their own words, we see how parents, well siblings, and the ill children themselves struggle, in different ways, to contain the intrusion of the disease into their lives. Bluebond-Langner looks at how parents adjust their priorities and their idea of what constitutes a normal life, how they try to balance the needs of other family members while caring for the ill child, and how they see the future. This context helps us understand how well siblings view the illness and how they relate to their ill sibling and parents. Since the issues raised are not unique to cystic fibrosis but are common to other chronic and life-threatening illnesses, this book will be of interest to all who study, care for, or live with the seriously ill.
Book Synopsis Promoting Adherence to Medical Treatment in Chronic Childhood Illness by : Dennis Drotar
Download or read book Promoting Adherence to Medical Treatment in Chronic Childhood Illness written by Dennis Drotar and published by Psychology Press. This book was released on 2000-08 with total page 515 pages. Available in PDF, EPUB and Kindle. Book excerpt: This interdisciplinary edited volume addresses critical gaps in scientific understanding of adherence/compliance to treatment regimens in chronic health conditions for children & Ados.
Book Synopsis Cystic Fibrosis in Primary Care by : Douglas Lewis, MD, FAAFP
Download or read book Cystic Fibrosis in Primary Care written by Douglas Lewis, MD, FAAFP and published by Springer Nature. This book was released on 2020-01-28 with total page 184 pages. Available in PDF, EPUB and Kindle. Book excerpt: Cystic fibrosis is a disease that affects the entire body. It tends to be thought of as primarily a pulmonary disease since pulmonary decline is the main factor in early mortality. Because of the multi-system nature of the disease, a better understanding of cystic fibrosis expands the family physician's understanding of subjects ranging from genetics to pulmonary function to nutrition to colon transport to hydration to electrolyte management. The primary care philosophy is unique in that it always considers how a narrow problem can affect an individual globally. Cystic Fibrosis care can often feel fractured to patients as they are sent to multiple specialists to deal with problems outside of the comfort level of a prior or current specialist. With a broad medical philosophy, care is more inclusive as clinicians can manage topics such as diabetes and preventive care without multiple referrals and additional appointments. Family physicians are well-positioned and well-qualified to competently meet many of the care needs of those with cystic fibrosis. This book is edited by a family medicine physician who has specialist level experience with the disease. It opens with a background on cystic fibrosis foundations and centers to familiarize the reader. The next chapter gives a basic overview of the disease. Each of the subsequent chapters provide a comprehensive look at how cystic fibrosis affects other areas of the body that the primary care physician should be familiar with. Major components of cystic fibrosis such as physiology, spirometry, inflammation, airway clearance, chronic infection, cystic fibrosis related diabetes and pancreatic insufficiency, among others, are thoroughly explained. Written by experts in the field, Cystic Fibrosis in Primary Care appeals to all family physicians as well as specialists, residents, medical students physician assistants and nurse practitioners alike.
Book Synopsis A Life Course Perspective on Health Trajectories and Transitions by : Claudine Burton-Jeangros
Download or read book A Life Course Perspective on Health Trajectories and Transitions written by Claudine Burton-Jeangros and published by Springer. This book was released on 2015-08-11 with total page 215 pages. Available in PDF, EPUB and Kindle. Book excerpt: This open access book examines health trajectories and health transitions at different stages of the life course, including childhood, adulthood and later life. It provides findings that assess the role of biological and social transitions on health status over time. The essays examine a wide range of health issues, including the consequences of military service on body mass index, childhood obesity and cardiovascular health, socio-economic inequalities in preventive health care use, depression and anxiety during the child rearing period, health trajectories and transitions in people with cystic fibrosis and oral health over the life course. The book addresses theoretical, empirical and methodological issues as well as examines different national contexts, which help to identify factors of vulnerability and potential resources that support resilience available for specific groups and/or populations. Health reflects the ability of individuals to adapt to their social environment. This book analyzes health as a dynamic experience. It examines how different aspects of individual health unfold over time as a result of aging but also in relation to changing socioeconomic conditions. It also offers readers potential insights into public policies that affect the health status of a population.
Book Synopsis A Parent's Guide to Cystic Fibrosis by : Burton L. Shapiro
Download or read book A Parent's Guide to Cystic Fibrosis written by Burton L. Shapiro and published by U of Minnesota Press. This book was released on 1991 with total page 156 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis Cystic Fibrosis by : Melanie Ann Apel
Download or read book Cystic Fibrosis written by Melanie Ann Apel and published by Scarecrow Press. This book was released on 2006 with total page 288 pages. Available in PDF, EPUB and Kindle. Book excerpt: Describes the challenges of living with cystic fibrosis, as well as a description of the illness, and an explanation of procedures for diagnosis and therapy.
Book Synopsis Liver Disease in Children by : Frederick J. Suchy
Download or read book Liver Disease in Children written by Frederick J. Suchy and published by Cambridge University Press. This book was released on 2007-05-07 with total page 995 pages. Available in PDF, EPUB and Kindle. Book excerpt: Completely revised new edition of the premier reference on pediatric liver disease. Liver Disease in Children, 3rd Edition provides authoritative coverage of every aspect of liver disease affecting infants, children, and adolescents. The book offers an integrated approach to the science and clinical practice of pediatric hepatology and charts the substantial progress in understanding and treating these diseases. Chapters are written by international experts and address the unique pathophysiology, manifestations, and management of these disorders in the pediatric population. The third edition has been thoroughly updated and features new contributions on liver development, cholestatic and autoimmune disorders, fatty liver disease, and inborn errors of metabolism. With the continued evolution of pediatric hepatology as a discipline, this text remains an essential reference for all physicians involved in the care of children with liver disease.
Download or read book Alex written by Frank Deford and published by Open Road Media. This book was released on 2015-02-24 with total page 115 pages. Available in PDF, EPUB and Kindle. Book excerpt: A father’s moving memoir of cystic fibrosis “captures a brave child’s legacy as well as the continuing fight against the genetic disease” (The New York Times). In 1971 a girl named Alex was born with cystic fibrosis, a degenerative genetic lung disease. Although health-care innovations have improved the life span of CF patients tremendously over the last four decades, the illness remains fatal. Given only two years to live by her doctors, the imaginative, excitable, and curious little girl battled through painful and frustrating physical-therapy sessions twice daily, as well as regular hospitalizations, bringing joy to the lives of everyone she touched. Despite her setbacks, brave Alex was determined to live life like a typical girl—going to school, playing with her friends, traveling with her family. Ultimately, however, she succumbed to the disease in 1980 at the age of eight. Award-winning author Frank Deford, celebrated primarily as a sportswriter, was also a budding novelist and biographer at the time of his daughter’s birth. Deford kept a journal of Alex’s courageous stand against the disease, documenting his family’s struggle to cope with and celebrate the daily fight she faced. This book is the result of that journal. Alex relives the events of those eight years: moments as heartwarming as when Alex recorded herself saying “I love you” so her brother could listen to her whenever he wanted, and as heartrending as the young girl’s tragic, dawning realization of her own very tenuous mortality, and her parents’ difficulty in trying to explain why. Though Alex is a sad story, it is also one of hope; her greatest wish was that someday a cure would be found. Deford has written a phenomenal memoir about an extraordinary little girl.
Download or read book Salt in My Soul written by Mallory Smith and published by Random House. This book was released on 2019-03-12 with total page 336 pages. Available in PDF, EPUB and Kindle. Book excerpt: The diaries of a remarkable young woman who was determined to live a meaningful and happy life despite her struggle with cystic fibrosis and a rare superbug—from age fifteen to her death at the age of twenty-five—the inspiration for the original streaming documentary Salt in My Soul “An exquisitely nuanced chronicle of a terrified but hopeful young woman whose life was beginning and ending, all at once.”—Los Angeles Times Diagnosed with cystic fibrosis at the age of three, Mallory Smith grew up to be a determined, talented young woman who inspired others even as she privately raged against her illness. Despite the daily challenges of endless medical treatments and a deep understanding that she’d never lead a normal life, Mallory was determined to “Live Happy,” a mantra she followed until her death. Mallory worked hard to make the most out of the limited time she had, graduating Phi Beta Kappa from Stanford University, becoming a cystic fibrosis advocate well known in the CF community, and embarking on a career as a professional writer. Along the way, she cultivated countless intimate friendships and ultimately found love. For more than ten years, Mallory recorded her thoughts and observations about struggles and feelings too personal to share during her life, leaving instructions for her mother to publish her work posthumously. She hoped that her writing would offer insight to those living with, or loving someone with, chronic illness. What emerges is a powerful and inspiring portrait of a brave young woman and blossoming writer who did not allow herself to be defined by disease. Her words offer comfort and hope to readers, even as she herself was facing death. Salt in My Soul is a beautifully crafted, intimate, and poignant tribute to a short life well lived—and a call for all of us to embrace our own lives as fully as possible.
Book Synopsis Integrated Palliative Care of Respiratory Disease by : Stephen Bourke
Download or read book Integrated Palliative Care of Respiratory Disease written by Stephen Bourke and published by Springer Science & Business Media. This book was released on 2012-12-03 with total page 244 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book brings together the knowledge, skills and attitudes of specialists in both Respiratory Medicine and Palliative Medicine to focus on the palliative care of patients with respiratory diseases. It deals not only with end of life care but also with symptom control and supportive care to improve the quality of life of those living their lives with advanced progressive lung disease.
Book Synopsis Breath from Salt by : Bijal P. Trivedi
Download or read book Breath from Salt written by Bijal P. Trivedi and published by BenBella Books. This book was released on 2020-09-08 with total page 744 pages. Available in PDF, EPUB and Kindle. Book excerpt: Recommended by Bill Gates and included in GatesNotes "Elaborating on the science as well as the business behind the fight against cystic fibrosis, Trivedi captures the emotions of the families, doctors, and scientists involved in the clinical trials and their 'weeping with joy' as new drugs are approved, and shows how cystic fibrosis, once a 'death sentence,' became, for many, a manageable condition. This is a rewarding and challenging work." —Publishers Weekly Cystic fibrosis was once a mysterious disease that killed infants and children. Now it could be the key to healing millions with genetic diseases of every type—from Alzheimer's and Parkinson's to diabetes and sickle cell anemia. In 1974, Joey O'Donnell was born with strange symptoms. His insatiable appetite, incessant vomiting, and a relentless cough—which shook his tiny, fragile body and made it difficult to draw breath—confounded doctors and caused his parents agonizing, sleepless nights. After six sickly months, his salty skin provided the critical clue: he was one of thousands of Americans with cystic fibrosis, an inherited lung disorder that would most likely kill him before his first birthday. The gene and mutation responsible for CF were found in 1989—discoveries that promised to lead to a cure for kids like Joey. But treatments unexpectedly failed and CF was deemed incurable. It was only after the Cystic Fibrosis Foundation, a grassroots organization founded by parents, formed an unprecedented partnership with a fledgling biotech company that transformative leaps in drug development were harnessed to produce groundbreaking new treatments: pills that could fix the crippled protein at the root of this deadly disease. From science writer Bijal P. Trivedi, Breath from Salt chronicles the riveting saga of cystic fibrosis, from its ancient origins to its identification in the dank autopsy room of a hospital basement, and from the CF gene's celebrated status as one of the first human disease genes ever discovered to the groundbreaking targeted genetic therapies that now promise to cure it. Told from the perspectives of the patients, families, physicians, scientists, and philanthropists fighting on the front lines, Breath from Salt is a remarkable story of unlikely scientific and medical firsts, of setbacks and successes, and of people who refused to give up hope—and a fascinating peek into the future of genetics and medicine.
Book Synopsis Nursing Care of Children and Young People with Long-Term Conditions by : Mandy Brimble
Download or read book Nursing Care of Children and Young People with Long-Term Conditions written by Mandy Brimble and published by John Wiley & Sons. This book was released on 2020-12-29 with total page 306 pages. Available in PDF, EPUB and Kindle. Book excerpt: The second edition of Nursing Care of Children and Young People with Long Term Conditions remains the only nursing-specific text on the care of paediatric patients with chronic illness. Written to meet the needs of nursing students and professionals alike, this comprehensive volume provides authoritative and up-to-date information on the context, theory, and practice of delivering holistic care to children and families in a range of health and social care settings. Contributions from a team of experienced academics, educators, and practitioners offer valuable insight into the impact of chronic illness on children and parents, the practical implications of meeting their physical, psychological, and social needs, empowering them to be 'experts' in their care, and many more vital aspects of long-term paediatric care. This edition features new and revised content reflecting contemporary guidelines and evidence-based practice, including updated clinical case studies and a new chapter examining the impact of having a sibling with a long-term condition. Emphasising a multi-disciplinary approach to managing chronic illness, this important resource: Provides numerous case studies and activities illustrating the application of theoretical principles and current evidence in nursing practice Investigates the genetic basis of chronic illness and the differing onsets of long-term conditions Discusses current political, economic, and social policies that are influencing healthcare for children and bringing challenges to managers and practitioners Examines both classic and contemporary theories of grief, loss, coping, and adaptation Explores ethical, legal, and professional aspects of nursing children and young people with chronic illness Addresses evolving nursing roles, the importance of acute emergency care, and the planning and delivery of effective transition from child to adult services Nursing Care of Children and Young People with Long Term Conditions is required reading for student and registered children's nurses, as well as for practitioners in related health and social care disciplines.
Book Synopsis Diagnostic Molecular Pathology in Practice by : Iris Schrijver
Download or read book Diagnostic Molecular Pathology in Practice written by Iris Schrijver and published by Springer Science & Business Media. This book was released on 2011-09-09 with total page 329 pages. Available in PDF, EPUB and Kindle. Book excerpt: This entirely case-based book covers a broad cross-section of the practical issues frequently encountered in the day-to-day activities of a molecular genetic pathologist. The book is divided into four sections on the principal areas addressed in molecular genetic pathology (MGP): inherited diseases, hematopathology, solid tumors, and infectious diseases. The topics covered by the cases in each section include test selection, qualitative and quantitative laboratory techniques, test interpretation, prognostic and therapeutic considerations, ethical considerations, technical troubleshooting, and result reporting. This book will be ideal for trainees in MGP and clinical molecular genetics who require a practice-based preparation for board examinations. It will also be very useful for residents and fellows in medical specialties to which MGP is pertinent, and for practicing pathologists who want to learn more about the current practice of molecular diagnostics.
Book Synopsis Cystic Fibrosis in Adults by : James R. Yankaskas
Download or read book Cystic Fibrosis in Adults written by James R. Yankaskas and published by Lippincott Williams & Wilkins. This book was released on 1999 with total page 536 pages. Available in PDF, EPUB and Kindle. Book excerpt: This manual combines research principles with practical guidelines for the clinical care of adult cystic fibrosis patients. There are discussions of clinical manifestations, pathophysiology, treatment options, patient management problems, and progress in developing new therapies. The work takes a multidisciplinary perspective, combining views from specialists in cystic fibrosis pathophysiology, pulmonology, cardiovascular disease, and gastroenterology. It also delivers key facts on disease manifestations at the molecular, cellular, tissue and organ system levels.
Book Synopsis Families, Health & Illness by : Carol B. Danielson
Download or read book Families, Health & Illness written by Carol B. Danielson and published by . This book was released on 1993 with total page 452 pages. Available in PDF, EPUB and Kindle. Book excerpt: This new text explores the intricate relationships between health, illness, and families and the nurses's integral role in this system. Designed to help the nurse understand the development of families' varied responses to illness stressors, the book presents practical interventions needed to prevent and decrease stress during illness. Content focuses on the family as the essential resource in the treatment of illness and the promotion of wellness. This text utilizes both a classic framework and an original model created by the authors.
