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 51–75 of 165 publications
Defining Neonatal Serious Illness
Background: One major challenge to the conduct of rigorous neonatal palliative care research is the lack of robust universally agreed upon definitions of key concepts central to pediatric and neonatal palliative care. Objective: We sought to define neonatal se…
Factors Affecting Hospice Use Among Adolescents and Young Adult Cancer Patients
Background/Objective: Compared to existing studies on end-of-life care of mid- to older-aged patients diagnosed with cancer, there is a paucity of research on adolescents and young adult (AYA) patients. Guided by the Anderson's Behavioral Model for Healthcare …
"If We Build It, Will They Come?" A Cohort Study of Family Utilization of a Pediatric-Specific Hospice Home
Objective: To determine whether families would make use of a pediatric-specific inpatient hospice facility for end-of-life care for children. Background: Location of end-of-life care and death are important considerations when treating children with life-limit…
Moral equivalence theory in neonatology
This article explores the ethical concept of "the equivalence thesis" (ET), or the idea that withdrawing and withholding life sustaining treatments are morally equivalent practices, within neonatology. We review the historical origins, theory, and clinical rat…
Mortality During Readmission Among Children in United States Children's Hospitals
OBJECTIVE: To identify demographic, clinical, and hospital factors associated with mortality on readmission within 180 days following an inpatient hospitalization. STUDY DESIGN: We conducted a retrospective cohort study including 33 US children's hospitals in …
Palliative Care Programs in Children's Hospitals
BACKGROUNG AND OBJECTIVES: This study determined the prevalence of PPC programs in the United States and compared the environment of children's hospitals with and without PPC programs.
METHODS: Analyses of the multicenter Children's Hospital Association Annual…
Pediatric End of Life Care and Bereavement During COVID- 19: The Experiences of Moral Distress
From the onset of the COVID-19 pandemic, psychosocial oncology providers have experienced various types of moral distress. Challenges include difficulty building rapport with telephone/computer replacing face-to-face connections, lack of clarity around who is …
Pediatric palliative care through the eyes of healthcare professionals, parents and communities: a narrative review
BACKGROUND AND OBJECTIVE: Pediatric palliative care is a holistic approach that aims to enhance the quality of life of seriously ill children and their families. Despite the documented benefits, many barriers challenge early integration of such care. The lack …
Racial Disparities in the Provision of Pediatric Psychosocial End-of-Life Services: A Systematic Review
Background: When compared with White patients, racial and ethnic minorities experience greater barriers to quality end-of-life care. Each year, approximately 52,000 children die in the United States, yet little is known about the disparities in pediatric palli…
The Fraught Notion of a "Good Death" in Pediatrics
In this article, I sort through some of the confusion surrounding what constitutes the controversial notion of a "good death" for children. I distinguish, first, between metaphysical and practical disagreements about the notion of a good death, and, second, be…
Care Provider Behaviors That Shape Parent Identity as a "Good Parent" to Their Seriously Ill Child
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Abstract
Background: Parents of medically complex children hold deeply personal definitions of how to be "good parents" that guide their medical decision making and interactions with providers and are impacted by provider behaviors. Objecti…
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…
Medical complexity and concurrent hospice care: A national study of Medicaid children from 2011 to 2013
PURPOSE: Pediatric hospice is a comprehensive model of care for medically complex children at end of life. The Affordable Care Act changed regulatory requirements for pediatric Medicaid enrollees to allow for enrollment into hospice services while still receiv…
Surgical Interventions During End-of-Life Hospitalizations in Children's Hospitals
OBJECTIVES: To characterize patterns of surgery among pediatric patients during terminal hospitalizations in children's hospitals. METHODS: We reviewed patients ≤20 years of age who died among 4 424 886 hospitalizations from January 2013-December 2019 within 4…
Defining the Boundaries of Palliative Care in Pediatric Oncology
Context: Although palliative care (PC) continues to be integrated into pediatric oncological care, only a minority of patients with cancer receive a formal PC consult.
Examining key sociodemographic characteristics of adolescents and young adults with cancer: A post hoc analysis of the Promoting Resilience in Stress Management randomized clinical trial
Background: The "Promoting Resilience in Stress Management" intervention is a skills-based, early palliative care intervention with demonstrated efficacy in adolescents and young adults with cancer.