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
Exploring What Motivates Parents of Children Living With Medical Complexity to Participate in Research
BACKGROUND: The study aimed to understand the experience of and identify the motivations for parents participating in health research for their children with medical complexity (CMC). Patient-oriented research strategies are increasingly important in health re…
Cardiopulmonary resuscitation in pediatric patients under palliative home care - A multicenter retrospective study
Introduction: Patients under palliative home care have special needs for their end-of-life support, which in general does not automatically include cardiopulmonary resuscitation. However, emergency medical services (EMS) respond to emergencies in children unde…
Documentation of Psychosocial Distress and Its Antecedents in Children with Rare or Life-Limiting Chronic Conditions
Children with rare or life-limiting chronic conditions and their families are at high risk of psychosocial distress. However, despite its impact on patient and family health and functioning, psychosocial distress and its antecedents may not routinely be captur…
Ethical challenges for a new generation of early-phase pediatric gene therapy trials
After decades of setbacks, gene therapy (GT) is experiencing major breakthroughs. Five GTs have received US regulatory approval since 2017, and over 900 others are currently in development. Many of these GTs target rare pediatric diseases that are severely lif…
Living through liminality? Situating the transitional experience of parents of children with mucopolysaccharidoses
BACKGROUND: Mucopolysaccharidoses (MPS) are rare inherited metabolic disorders that come under category three of life-limiting conditions. Children born with this condition show no symptoms at birth, but its effects show as a progressive disease in subsequent …
Inborn Errors Of Metabolism In Neonatal Period: A Challenging Management In Tunisia
OBJECTIVE: To assess clinical presentation of inborn errors of metabolism in neonatal period and to identify challenges in their management. METHODS: This is a retrospective study carried out in the department of Intensive Care and Neonatal Medicine of Monasti…