Oxford Textbook of Palliative Care for Children by Hain Richard; Goldman Ann; Rapoport Adam

Author:Hain, Richard; Goldman, Ann; Rapoport, Adam
Language: eng
Format: epub
Publisher: Oxford University Press, Incorporated
Published: 2021-10-15T00:00:00+00:00

23

Neurological and neuromuscular conditions and symptoms

Jori F. Bogetz and Julie M. Hauer

Introduction

Children with severe neurological impairment (SNI) make up a very small percentage of the paediatric population but account for a significant proportion of healthcare utilization (1). These children often have congenital, genetic, metabolic, or traumatic conditions leading to the need for caregiver support with the most basic personal care needs. With the growing number of rare conditions associated with SNI, uncertainty about prognosis and the impact of testing and therapies is pervasive (2). In addition, as research is ongoing for many of these conditions, parents and providers often make decisions while simultaneously hoping for breakthrough treatments. Furthermore, symptoms resulting from the impaired central nervous system (CNS) are common, but literature is often too limited to guide providers when counselling families (3). Paediatric palliative care (PPC) providers are well suited to support families of children with SNI given the uncertainty and life-limiting nature of their conditions and the focus on symptom management and quality of life.

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