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.
Foreword, by Chris Feudtner, MD, PhD, MPH Preface Acknowledgments 1. Caring for a Child Who Has Severe Neurological Impairment: An Overview 2. Impairment of the Central Nervous System: Specific Conditions 3. Treating Pain and Other Distressing Symptoms: An Overview 4. Pain: Evaluation and Treatment 5. Gastrointestinal Problems: Retching, Vomiting, Feeding Intolerance, and Other Problems 6. Respiratory Problems: Pneumonia, Excessive Secretions, and Respiratory Distress 7. Problems of the Central Nervous System: Spasticity, Dystonia, Dysautonomia, Seizures, andRelated Problems 8. Changes from the Expected: Sleep, Temperature, Heart Rate, Sodium Levels, Puberty, Growth, and Nutrition 9. Decision Making 10. Care at the End of Life Glossary Index
""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.""
