Published literature
Publications
Published children's palliative care research: browsable, searchable and filterable by the same taxonomy as researchers, groups and guides.
This library is curated by The Siden Research Team as part of the TRENDS in Pediatric Palliative Care newsletter and library. Learn more about TRENDS and The Siden Research Team and subscribe to read their monthly expert commentaries on their website.
Showing 1–12 of 12 publications
Integrating a palliative approach into the healthcare provided by the French-African Pediatric Oncology Group's pilot units. Insights from a 3-year training program
Working alongside local stakeholders, members of the French-African Pediatric Oncology Group developed a 3-year program to train pediatric oncology teams from 15 French-speaking countries in Africa in using analgesics and providing palliative care. This progra…
Caregiver-reported impact on quality of life and disease burden in patients diagnosed with metachromatic leukodystrophy: Results of an online survey and a qualitative interview
Metachromatic leukodystrophy (MLD) is a rare autosomal recessive lysosomal disorder caused by a deficiency of the enzyme arylsulfatase A (ARSA). Symptoms include motor decline, developmental regression, decreased intellectual capabilities, and behavioural/psyc…
High-intensity end-of-life care among children, adolescents, and young adults with cancer who die in the hospital: A population-based study from the French national hospital database
Background: Efforts to improve the quality of end-of-life (EOL) care depend on better knowledge of the care that children, adolescents, and young adults with cancer receive, including high-intensity EOL (HI-EOL) care. The objective was to assess the rates of H…
Supportive care in children with spinal muscular atrophy type 1: Results from a french multicentric study
Introduction: This National Hospital Clinical Research Program (PHRC) was conducted in France between 2012 and 2016 to depict palliative practices in spinal muscular atrophy type 1 (SMA-1). New drugs (Nusinersen) have been developed and may modify its natural …
End-of-life decisions for extremely preterm infants - a matter of language, gender and education?
Most of the paediatric patients who die are neonates. Pregnancy complications, including extreme prematurity, childbirth and congenital malformations, account for more deaths in childhood than malignancies and accidents combined, both in high- and low-resource…
Withdrawal of artificial nutrition and hydration in neonatal intensive care: parents' and healthcare practitioners' views
Withdrawing Artificial Nutrition and Hydration (WANH) in the neonatal intensive care units (NICUs) has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the stakeholders' exp…
Termination of pregnancy without feticide: A French national survey. [French]
Purpose. - Termination of pregnancy without feticide (TOPWF) is poorly known in France and far less practiced than palliative care after term birth of a child having a lethal pathology. Few teams consider it and its practice remains confidential. This survey t…
Forgoing life support: how the decision is made in European pediatric intensive care units
PURPOSE: To determine how decisions to forgo life support are made in European pediatric intensive care units (PICUs).
METHODS: A multicenter, prospective study, the Eurydice II study, among 45 PICUs: 20 in France, 21 in Northern/Western (N/W) European countri…