An expert physician empowers parents to make informed decisions about
their child's care.
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.