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Burden Of Cerebral Adrenoleukodystrophy On Affected Children And Their Families Through The Eyes Of Family Caregivers
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Book Synopsis Burden of cerebral adrenoleukodystrophy on affected children and their families through the eyes of family caregivers by : Caroline Sevin
Download or read book Burden of cerebral adrenoleukodystrophy on affected children and their families through the eyes of family caregivers written by Caroline Sevin and published by OAE Publishing Inc.. This book was released on 2022-12-30 with total page 19 pages. Available in PDF, EPUB and Kindle. Book excerpt: Aim: This research assessed the needs of family caregivers of children with cerebral adrenoleukodystrophy (cALD), focusing on the diagnostic process; the burden of the disease on the child and their caregiver’s quality of life; and the physical, social, psychological, professional, and financial impacts on the whole family. Methods: Family caregivers of children with cALD were recruited via the European Leukodystrophies Association International’s online platform, Leuconnect, to respond to a quantitative survey and a quality-of-life questionnaire and participate in a qualitative semi-structured interview. The questions focused on disease experience from onset to diagnosis and consequences on current life. Twelve family caregivers of 14 children were interviewed. Results: cALD diagnosis took an average of 16.5 months, and 8 of 12 children were misdiagnosed, with parents often describing a lack of listening from doctors. Caregivers described bedridden children whose poor quality of life correlated with a high Neurologic Function Score. On average, they needed to care for their children 7.7 h/day, with serious consequences for their employment, social life, and psychological state. Conclusion: Our interviews with family caregivers helped us to consider limiting diagnostic wandering by improving the skills of general practitioners and public knowledge of pathology. By gathering information on precise daily routines centered around a dependent child, we can better understand how to effectively support families by adapting not only the global care of the child but also to the following needs expressed for the entire family: better information, coordination of both care and administrative procedures, and real respite.
Book Synopsis Clinical Case Studies for the Family Nurse Practitioner by : Leslie Neal-Boylan
Download or read book Clinical Case Studies for the Family Nurse Practitioner written by Leslie Neal-Boylan and published by John Wiley & Sons. This book was released on 2011-11-28 with total page 432 pages. Available in PDF, EPUB and Kindle. Book excerpt: Clinical Case Studies for the Family Nurse Practitioner is a key resource for advanced practice nurses and graduate students seeking to test their skills in assessing, diagnosing, and managing cases in family and primary care. Composed of more than 70 cases ranging from common to unique, the book compiles years of experience from experts in the field. It is organized chronologically, presenting cases from neonatal to geriatric care in a standard approach built on the SOAP format. This includes differential diagnosis and a series of critical thinking questions ideal for self-assessment or classroom use.
Book Synopsis When Doctors Don't Listen by : Dr. Leana Wen
Download or read book When Doctors Don't Listen written by Dr. Leana Wen and published by Macmillan. This book was released on 2013-01-15 with total page 350 pages. Available in PDF, EPUB and Kindle. Book excerpt: Discusses how to avoid harmful medical mistakes, offering advice on such topics as working with a busy doctor, communicating the full story of an illness, evaluating test risks, and obtaining a working diagnosis.
Download or read book Arthrogryposis written by Lynn T. Staheli and published by Cambridge University Press. This book was released on 1998-04-28 with total page 298 pages. Available in PDF, EPUB and Kindle. Book excerpt: The term arthrogryposis describes a range of congenital contractures that lead to childhood deformities. It encompasses a number of syndromes and sporadic deformities that are rare individually but collectively are not uncommon. Yet, the existing medical literature on arthrogryposis is sparse and often confusing. The aim of this book is to provide individuals affected with arthrogryposis, their families, and health care professionals with a helpful guide to better understand the condition and its therapy. With this goal in mind, the editors have taken great care to ensure that the presentation of complex clinical information is at once scientifically accurate, patient oriented, and accessible to readers without a medical background. The book is authored primarily by members of the medical staff of the Arthrogryposis Clinic at Children's Hospital and Medical Center in Seattle, Washington, one of the leading teams in the management of the condition, and will be an invaluable resource for both health care professionals and families of affected individuals.
Book Synopsis Pediatric Neuro-Ophthalmology by : Michael C. Brodsky
Download or read book Pediatric Neuro-Ophthalmology written by Michael C. Brodsky and published by Springer Science & Business Media. This book was released on 2012-12-06 with total page 692 pages. Available in PDF, EPUB and Kindle. Book excerpt: Pediatric Neuroophthalmology details the diagnostic criteria, current concepts of pathogenesis, neuroradiological correlates, and clinical management of a large group of neuroophthalmic disorders that present in childhood. Surprisingly distinct from neuroophthalmic disorders afflicting adults, this set of diseases falls between the cracks of most ophthalmology training, and thus, warrants a practical, clinical guide for the practitioner in ophthalmology - the neuroophthalmologist, pediatric ophthalmologist, general ophthalmologist - as well as neurologists and for residents. The authors, leading pediatric ophthalmologists, have taken this difficult subject matter and developed an accessible, user-friendly manual with a detailed approach to the recognition, differential diagnosis, and management of pediatric neuroophthalmologic disorders.
Book Synopsis Effective Collaboration for Educating the Whole Child by : Carol A. Kochhar-Bryant
Download or read book Effective Collaboration for Educating the Whole Child written by Carol A. Kochhar-Bryant and published by Corwin Press. This book was released on 2010-04-21 with total page 281 pages. Available in PDF, EPUB and Kindle. Book excerpt: Educate the whole child by building a culture of collaboration in your school! This book for K–12 general and special education teachers, administrators, and student support specialists explores how to make collaboration and coordination work, who takes responsibility for the process, and why collaboration is central to improving outcomes for students with complex learning needs. The author: Discusses the roles, responsibilities, and relationships between school professionals, community agencies, and service providers Offers case examples as real-world illustrations of collaboration Emphasizes important developmental transitions from the elementary years through high school and after
Book Synopsis Human Genetics and Genomics by : Bruce R. Korf
Download or read book Human Genetics and Genomics written by Bruce R. Korf and published by John Wiley & Sons. This book was released on 2012-11-19 with total page 280 pages. Available in PDF, EPUB and Kindle. Book excerpt: This fourth edition of the best-selling textbook, Human Genetics and Genomics, clearly explains the key principles needed by medical and health sciences students, from the basis of molecular genetics, to clinical applications used in the treatment of both rare and common conditions. A newly expanded Part 1, Basic Principles of Human Genetics, focuses on introducing the reader to key concepts such as Mendelian principles, DNA replication and gene expression. Part 2, Genetics and Genomics in Medical Practice, uses case scenarios to help you engage with current genetic practice. Now featuring full-color diagrams, Human Genetics and Genomics has been rigorously updated to reflect today’s genetics teaching, and includes updated discussion of genetic risk assessment, “single gene” disorders and therapeutics. Key learning features include: Clinical snapshots to help relate science to practice 'Hot topics' boxes that focus on the latest developments in testing, assessment and treatment 'Ethical issues' boxes to prompt further thought and discussion on the implications of genetic developments 'Sources of information' boxes to assist with the practicalities of clinical research and information provision Self-assessment review questions in each chapter Accompanied by the Wiley E-Text digital edition (included in the price of the book), Human Genetics and Genomics is also fully supported by a suite of online resources at www.korfgenetics.com, including: Factsheets on 100 genetic disorders, ideal for study and exam preparation Interactive Multiple Choice Questions (MCQs) with feedback on all answers Links to online resources for further study Figures from the book available as PowerPoint slides, ideal for teaching purposes The perfect companion to the genetics component of both problem-based learning and integrated medical courses, Human Genetics and Genomics presents the ideal balance between the bio-molecular basis of genetics and clinical cases, and provides an invaluable overview for anyone wishing to engage with this fast-moving discipline.
Book Synopsis Trauma Systems Therapy for Children and Teens, Second Edition by : Glenn N. Saxe
Download or read book Trauma Systems Therapy for Children and Teens, Second Edition written by Glenn N. Saxe and published by Guilford Publications. This book was released on 2015-11-11 with total page 522 pages. Available in PDF, EPUB and Kindle. Book excerpt: "For too many traumatized children and their families, chronic stressors such as poverty, substance abuse, and family or community violence--coupled with an overburdened care system/m-/pose seemingly insurmountable barriers to treatment. This empowering book provides a user-friendly blueprint for making the most of limited resources to help those considered the "toughest cases." Evidence-based strategies are presented for effectively integrating individualized treatment with services at the home, school, and community levels. Written in an accessible, modular format with reproducible forms and step-by-step guidelines for assessment and intervention, the approach is grounded in the latest knowledge about child traumatic stress. It has been recognized as a treatment of choice by state mental health agencies nationwide"--
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.
Author :Charles R. Scriver Publisher :New York ; Montreal : McGraw-Hill ISBN 13 :9780071363198 Total Pages :6338 pages Book Rating :4.3/5 (631 download)
Book Synopsis The Metabolic & Molecular Bases of Inherited Disease by : Charles R. Scriver
Download or read book The Metabolic & Molecular Bases of Inherited Disease written by Charles R. Scriver and published by New York ; Montreal : McGraw-Hill. This book was released on 2001 with total page 6338 pages. Available in PDF, EPUB and Kindle. Book excerpt: Presents clinical, biochemical, and genetic information concerning those metabolic anomalies grouped under inborn errors of metabolism.
Book Synopsis Forced to Care by : Evelyn Nakano Glenn
Download or read book Forced to Care written by Evelyn Nakano Glenn and published by Harvard University Press. This book was released on 2010-06-15 with total page 280 pages. Available in PDF, EPUB and Kindle. Book excerpt: "Scouring the history of Native American boarding schools, nineteenth-century reformatories, and programs to Americanize immigrants, Glenn brilliantly reveals the role of coercion in caregiving. An important read for us all."---Arlie Hochschild, author of The Time Bind --
Download or read book Losing a Million Minds written by and published by . This book was released on 1987 with total page 539 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis In Sickness and in Play by : Cindy Dell Clark
Download or read book In Sickness and in Play written by Cindy Dell Clark and published by Rutgers University Press. This book was released on 2003 with total page 244 pages. Available in PDF, EPUB and Kindle. Book excerpt: The author's 46 interviews with the families of children with chronic illness give an understanding of how the children comprehend their illnesses and how parents struggle daily to care for their kids while trying to give them a 'normal' childhood.
Book Synopsis Progressive Brain Disorders in Childhood by : Juan M. Pascual
Download or read book Progressive Brain Disorders in Childhood written by Juan M. Pascual and published by Cambridge University Press. This book was released on 2017-04-20 with total page 507 pages. Available in PDF, EPUB and Kindle. Book excerpt: A review of childhood neurodegenerative and other progressive but non-degenerative disorders to guide their diagnosis and management.
Book Synopsis Planning Guide for Maintaining School Facilities by : Tom Szuba
Download or read book Planning Guide for Maintaining School Facilities written by Tom Szuba and published by DIANE Publishing. This book was released on 2003 with total page 184 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book Without a Word written by Jill Kelly and published by Hachette UK. This book was released on 2010-09-09 with total page 232 pages. Available in PDF, EPUB and Kindle. Book excerpt: WITHOUT A WORD is a riveting memoir that blends remarkable achievement with passion, sacrifice, love, pain, and human interest. It takes the reader into the lives of a celebrity couple, Pro Football Hall of Famer Jim Kelly, and his wife, Jill, to reveal the Kelly family's private struggle and how eight and a half years with their severely disabled, terminally ill son, Hunter, unfolded in a redemptive and transforming manner. The light of Hunter's love through his brief and silent life shone into the shadowed corners of Jill and Jim's lives resulting in Jill believing that Jesus Christ was authentic, her learning to forgive Jim of past indiscretions, and finally resulting in Jim's seeking and finding God. Lessons gleaned from Hunter's life and death, and Jim and Jill's struggle to save their marriage during tumultuous times, make this a compelling and inspiring read.
Book Synopsis Clinical Pathways in Stroke Rehabilitation by : Thomas Platz
Download or read book Clinical Pathways in Stroke Rehabilitation written by Thomas Platz and published by Springer Nature. This book was released on 2021-01-14 with total page 284 pages. Available in PDF, EPUB and Kindle. Book excerpt: This open access book focuses on practical clinical problems that are frequently encountered in stroke rehabilitation. Consequences of diseases, e.g. impairments and activity limitations, are addressed in rehabilitation with the overall goal to reduce disability and promote participation. Based on the available best external evidence, clinical pathways are described for stroke rehabilitation bridging the gap between clinical evidence and clinical decision-making. The clinical pathways answer the questions which rehabilitation treatment options are beneficial to overcome specific impairment constellations and activity limitations and are well acceptable to stroke survivors, as well as when and in which settings to provide rehabilitation over the course of recovery post stroke. Each chapter starts with a description of the clinical problem encountered. This is followed by a systematic, but concise review of the evidence (RCTs, systematic reviews and meta-analyses) that is relevant for clinical decision-making, and comments on assessment, therapy (training, technology, medication), and the use of technical aids as appropriate. Based on these summaries, clinical algorithms / pathways are provided and the main clinical-decision situations are portrayed. The book is invaluable for all neurorehabilitation team members, clinicians, nurses, and therapists in neurology, physical medicine and rehabilitation, and related fields. It is a World Federation for NeuroRehabilitation (WFNR) educational initiative, bridging the gap between the rapidly expanding clinical research in stroke rehabilitation and clinical practice across societies and continents. It can be used for both clinical decision-making for individuals and as well as clinical background knowledge for stroke rehabilitation service development initiatives.
