Author: Cynthia S. HenryPublisher: Jayjo Books
ISBN: 9781891383090
Category : Cystic fibrosis in children
Languages : en
Pages : 0
Book Description
Illustrations and simple text help children learn what cystic fibrosis is and how it is dealt with.
Taking Cystic Fibrosis to School
Author: Cynthia S. HenryPublisher: Jayjo Books
ISBN: 9781891383090
Category : Cystic fibrosis in children
Languages : en
Pages : 0
Book Description
Illustrations and simple text help children learn what cystic fibrosis is and how it is dealt with.
Cystic Fibrosis
Author: David M. OrensteinPublisher: Lippincott Williams & Wilkins
ISBN: 1451154380
Category : Medical
Languages : en
Pages : 788
Book Description
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.”
School Nursing
Author: Janice SelekmanPublisher: F.A. Davis
ISBN: 0803699190
Category : Medical
Languages : en
Pages : 1008
Book Description
Produced in cooperation with the National Association of School Nurses, this text includes comprehensive coverage of the multiple facets of school nursing—from the foundations of practice and the roles and functions of a school nurse through episodic and chronic illness and behavioral issues, to legal issues and leading and managing within school settings. Written and edited by school nurses and pediatric experts, it features real-world-tested, best practices based on evidence and experience. There’s content here that you won’t find in other books, such as health assessments, individualized health plan development, mental health conditions including adolescent depression, contemporary legal issues, and current policy statements essential to school nursing.
Cystic Fibrosis and School
Author: Jane PriceCystic Fibrosis
Author: Stephanie Duggins DavisPublisher: Springer Nature
ISBN: 3030423824
Category : Medical
Languages : en
Pages : 525
Book Description
This book provides a comprehensive overview of the multisystem disease, cystic fibrosis, for both pediatric and adult patients. Written by experts in the field, the text outlines the progressive nature of CF as well as the impact of this autosomal recessive disease on the respiratory, gastrointestinal, endocrine, rheumatologic, and renal systems, as well as the patient’s mental health. The book begins with a chapter describing the history of cystic fibrosis and how the face of this life-shortening disease has changed over the past several decades. The following chapters elucidate the pathophysiology of how cystic fibrosis impacts each organ system. Current management and therapeutics are detailed with step-by-step guidelines for clinicians. This book is unique in that it highlights the entire person, not just the respiratory system, with detailed inclusion of the patient perspectives throughout, informing practice standards and considerations. This is an ideal guide for pediatric and adult physicians who care for patients with cystic fibrosis, as well as respiratory therapists, physical therapists, nurses, nutritionists, and pharmacists who care for these patients.
Parent's Opinions of how the School Affects Their Cystic Fibrosis Child
Author: Nancy Lynn SkinnerPublisher:
ISBN:
Category : Chronically ill children
Languages : en
Pages : 72
Book Description
Cystic Fibrosis in Primary Care
Author: Douglas Lewis, MD, FAAFPPublisher: Springer Nature
ISBN: 3030259099
Category : Medical
Languages : en
Pages : 184
Book Description
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.
Challenges in Collaboration Between Educators and Parents of Students with Cystic Fibrosis
Author: Publisher:
ISBN:
Category :
Languages : en
Pages : 172
Book Description
The purpose of this study was to identify the challenges or barriers that are present in the collaboration between educators and parents of students with special needs. After completing a project and a questionnaire, the researcher interviewed both parents and teachers of students with Cystic Fibrosis (CF). The researcher was looking for the perceptions of both the parents and the teachers of the same student and if there was any variance in those perceptions. The researcher was also looking for areas in collaboration that had barriers or challenges. Findings of the case study were particular to a group of parents from a social media support group on Facebook called "CF Mamas," who had children that had the genetic disease Cystic Fibrosis and that same child's teacher; this group may serve as a model or provide insights for other CF parents and their teachers. The researcher focused on four specific sub-questions to assess the barriers or challenges in collaboration between parents of children with CF and their teachers. What were the parents of CF students perceived issues in the collaborative process in schools; what did teachers perceive were the problems in the collaborative process between schools and parents of students with CF; what did parents believe schools could do better in the collaborative process; and what did teachers believe parents could do better in the collaborative process. The data collected by the researcher pointed to a conclusion that collaboration between the parents and teachers of the student with CF is a perceived necessary aspect of the partnership in the education of a child with Cystic Fibrosis from the perspective of the parents. Key findings from the research indicated that the child's needs specific to his or her disease were being met at school; that the teachers believed they understood the child's disease with more confidence than that of the parents being surveyed; that both the parents and teachers surveyed perceived that the agreed upon accommodations were being met at school; bot the parents and the teachers agreed that the child with CF could access his or her medication when needed and in a timely manner at school; the majority of the parents and teachers believed their role in the collaborative process was clearly defined; parents and teachers both responded in a timely manner to each other's communications; the results from the parent responses about proactive communication indicated that it was their expectation that proactive communication fell on the role of the teacher; and that both parents and teachers provided convenient times to meet when needed. The researcher asserted that collaboration was successful and perceived from the perspective of the teachers while the parents did not experience the same collaboration to the same positive degree, or have yet to have this experience. The majority of responses from both surveys were that the teachers (100%) and parents (95.2%) believed they were in a partnership when it came to the child's educational and medical accommodations in the classroom. The researcher maintains that collaboration is not only vital in the education of a child with special needs, specifically CF, but in this case of the sample population, the collaboration was perceived to be occurring. Key words: Cystic Fibrosis, collaboration, special education, special needs, parent, teacher
Salt in My Soul
Author: Mallory SmithPublisher: Random House
ISBN: 1984855433
Category : Biography & Autobiography
Languages : en
Pages : 336
Book Description
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.
Alex
Author: Frank DefordPublisher: Open Road Media
ISBN: 1504007336
Category : Biography & Autobiography
Languages : en
Pages : 115
Book Description
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.