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 1–16 of 16 publications
12 years of specialized pediatric palliative inpatient care: description of patients' characteristics
BackgroundPediatric Palliative Care (PPC) patients represent a highly heterogeneous population. Depending on the specific needs of the child and their family, PPC is provided at different levels, ranging from a basic PPC approach to highly specialized PPC in t…
Prevalence and Mortality of Life-Threatening and Life-Shortening Diseases in Children and Adolescents in Germany
This study provides prevalence and mortality data for 0- to 19-year-old children and adolescents with medically documented life-threatening and life-shortening diagnoses in Germany. A secondary data analysis of more than 12 million insured persons documented b…
Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates
Importance: Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the general public …
Translation and cultural adaptation of the Italian version of the Paediatric Palliative Screening Scale
The number of children eligible for Paediatric Palliative Care has dramatically increased over the years, with few tools that can help with early identification. The Paediatric Palliative Screening Scale is a dedicated German, English, and Portuguese screening…
Parental Ethical Decision Making and Implications for Advance Care Planning: A Systematic Review and Secondary Analysis of Qualitative Literature from England and Wales, Germany, and the Netherlands
Background: Clinicians and parents are expected to make medical treatment decisions in the child's best interests. To reach their decisions, clinicians typically apply a principled approach outlined by Beauchamp and Childress. How parents make ethical decision…
Supportive care for cancer-related symptoms in pediatric oncology: a qualitative study among healthcare providers
Background: The aim of this study is to gain insight into the clinical experiences and perceptions that pediatric oncology experts, conventional healthcare providers, and complementary and alternative medicine (CAM) providers in Norway, Canada, Germany, the Ne…
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…
Challenges in Pediatric Advance Care Discussions Between Health Care Professionals and Parents of Children with a Life-Limiting Condition: A Qualitative Pilot Study
Objectives: Research has shown that advance care planning concepts for adults need to be revised and adapted to be applicable to pediatric situations. A consistent approach to pediatric advance care planning (pACP) is still missing. The study aimed to (1) iden…
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…
Aspects of palliative care in child neurology
Pediatric palliative medicine/care (PPC) is an approach to care that focuses on improving the quality of life of children facing a life limiting condition (LLC). LLCs are classified by the ACT (Association for children with life-threatening or terminal conditi…