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 1–5 of 5 publications
Adaptation of Pediatric Palliative Care Groups to Metabolic Diseases: Beyond the Pathways
The Palliative Care (PC) aims to control suffering in the physical, psychological, spiritual and social spheres. The growing number of studies that emphasize the importance of PC in the field of Inborn Metabolic Diseases (IMD) reinforce the substantial frequen…
Pediatric palliative care for metabolic diseases: 20-year epidemiological survey of outpatients at a Brazilian quaternary hospital
The interface between pediatric palliative care (PPC) and inborn metabolic diseases (IMD) remains incipient, though these conditions fill the state of art of complex chronic diseases, eligible to this health approach. We analyzed the medical records of PPC cli…
Paediatric Palliative Care in a Reference Centre of Inherited Metabolic Diseases
INTRODUCTION: Paediatric palliative care (PPC) has a significant role in improving the quality of life of children with life-limiting or life-threatening illnesses, diminishing symptom burden, and providing holistic support to patients and families. Inherited …
Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey
BACKGROUND AND OBJECTIVE: Children with inherited metabolic diseases often require complex and highly specialized care. Patient and family-centered care can improve health outcomes that are important to families. This study aimed to examine experiences of fami…
Inborn Errors of Metabolism in Pediatric Palliative Care
BACKGROUND: In parallel with the increase in the number of children with life-limiting or threatening diseases, the need and right of pediatric palliative care also increases. In this study, it was aimed to examine the metabolic diseases, evaluate the symptoms…