Caring for Children Who Have Severe Neurological Impairment

by Julie M. Hauer

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.

703 pages, Kindle Edition

First published June 12, 2013

Reviews

[Galen · Rating 5 out of 5]

Wow. What an incredibly practical and helpful book for taking care of the most complex children as well as how to better support their families. I could easily write an essay of this book's importance, but I think its best quality is Dr. Hauer's ability to simultaneously reach and educate both parents and providers. I will undoubtedly use this book for years to come.

[Morgan · Rating 4 out of 5]

Tremendous reference for use in the care of my patient! So many questions and concerns were addressed. User-friendly and very focused on compassionate care. Great read!

[Jess · Rating 3 out of 5]

This is the only book at the library I could find that even mentioned dysautonomia.

[Jenny · Rating 5 out of 5]

This book is an incredible resource for parents. It has helped me so much in the care for my son. Both our neurologist and metabolic specialist ordered it when I brought it into our last appointment.