Browse Items · Pediatric Palliative Care Library

Fifteen-minute consultation: How to approach the withdrawal of neonatal intensive care

Withdrawal of life-sustaining support on the neonatal unit presents a set of unique challenges specific in this age group of patients. This article aims to provide an overview of the key factors that should be considered during this process. It…

Tags: 2021, Archives of Disease in Childhood: Education and Practice Edition, Faller A, Gardham A, Genetics, July 2021 List, Neonatology, Palliative Care, Premadeva I, Psychology, Selkirk L

Mortality in parents after the death of a child

The death of a child is a traumatic stressor that takes a toll on the health of parents. This study examined long-term impacts of the death of a child on the risk of early mortality in bereaved parents. In a follow-up analysis, a twin subsample was…

Characteristics of a Perinatal Palliative Care Program Over 10 years

Background: Perinatal Hospice is a relatively new component of pediatric palliative care, which supports families who are expecting the birth of a child with life-threatening or life-limiting condition. Parents in this situation have unique needs and…

Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions

Background Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis,…

Tags: 2014, Andrews GS, Archives of Disease in Childhood, Backlog, Cadell S, Davies B, Feichtinger L, Genetics, Journal Article, Metabolic, Neurodisability, PEDI Study, Siden H, Singh M, Steele R

Loss-of-function mutations in the Nav1.7 gene underlie congenital indifference to pain in multiple human populations

Congenital indifference to pain (CIP) is a rare condition in which patients have severely impaired pain perception, but are otherwise essentially normal. We identified and collected DNA from individuals from nine families of seven different…

Observations on Huntington's Chorea in Childhood

1965

Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions.

BACKGROUND: Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis,…

Pediatric Cardiomyopathies

Pediatric cardiomyopathies are rare diseases with an annual incidence of 1.1 to 1.5 per 100 000. Dilated and hypertrophic cardiomyopathies are the most common; restrictive, noncompaction, and mixed cardiomyopathies occur infrequently; and…

'a Short Time But A Lovely Little Short Time': Bereaved Parents' Experiences Of Having A Child With Spinal Muscular Atrophy Type 1

AIM: Spinal muscular atrophy (SMA) type 1 is a relatively common, untreatable and invariably fatal neuromuscular disorder of early childhood. Psychosocial care is vital in management of families affected by this disease. There are few studies…

Tags: 2016, Bereavement, Forbes R, Genetics, Higgs EJ, Journal of Paediatrics and Child Health, July 2017 List, McClaren BJ, Neuromuscular Disease, Qualitative Research, Ryan MM, Sahhar MAR, Spinal Muscular Atrophy

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