Global impairment of the central nervous system, whether stable or progressive, is often called severe neurological impairment (SNI). A child who has SNI will be cared for both by specialist clinicians and by parents at home. A parent is a child's best expert and advocate, and many parents become highly skilled in managing their child's care. This guide provides information to help parents increase their knowledge and improve their caregiving skills.
In Caring for Children Who Have Severe Neurological Impairment, Dr. Julie M. Hauer advocates shared decision making between family caregivers and healthcare providers. She details aspects of medical care such as pain, sleep, feeding, and respiratory problems that will be particularly useful to parents. Tables and key points summarize discussions for clear, quick reference, while case studies and stories illustrate how different families approach decision making, communication, care plans, and informed consent.
Parents and other caregivers will find this book to be indispensable-as will bioethicists and clinicians in pediatrics, neurology, physical and rehabilitative medicine, palliative care, and others who care for children with neurological and neuromuscular disorders. Dr. Hauer offers hope and practical coping strategies in equal measure.
Publisher: Johns Hopkins University Press
Number of pages: 480
Weight: 703 g
Dimensions: 235 x 156 x 28 mm
Caring for Children Who Have Severe Neurological Impairment... is the only book that has even made an attempt to tackle this difficult topic in any meaningful sort of way. The author has succeeded in creating what should become the caregiving Bible for any family of a child with severe neurological impairment regardless of diagnosis, or any medical provider for this population... The information provided, and the approaches recommended, are too important to be overlooked... Caring for Children Who Have Severe Neurological Impairment: A Life with Grace is highly recommended and should be on the bookshelf of every parent dealing with complex medical issues. -- Susan Agrawal * Complex Child *
For the health-care professional who provides care or interaction at any level to SNI patients, this books is a valuable resource. This is also a great resource to refer to family members and care givers. It helps with understanding and assists with developing questions for the health-care team. The family members reading this book will increase their abilities to advocate for their child's medical, social, and emotional needs. It provides tools and information that promotes dignity and respect for life in all its phases. -- Marilyn Mills * Journal of Radiology Nursing *