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 226–250 of 4332 publications
Pediatric home-based hospice and palliative care: a scoping review
Pediatric palliative and/or hospice care is provided across a broad spectrum of settings, ranging from inpatient to outpatient to a child's home. Pediatric home-based hospice and/or palliative care teams offer a specialized, interdisciplinary approach to care,…
Pediatric intensive care nurses' perspectives on the quality of dying and death among hospitalized children: A Cross-Sectional Study
Background: Nurses are continuously present at the bedside and work closely with both children and families; therefore, their perspectives can provide a detailed understanding of end-of-life care. This study examined the quality of dying and death among hospit…
Pediatric Neuropalliative Medicine Clinic: Five-Year Data Characterizing a Novel Model of Outpatient Care
Objective
Pediatric neuropalliative medicine (PNPM) is a recently developed area of subspecialty neurology practice focused on supporting the complex emotional, psychological, and physical aspects of caring for a child with serious neurological disease. This s…
Pediatric Pain Management and Palliative Care in Nigeria: A Scoping Review
ABSTRACT Background Pain is a common experience for pediatric patients, yet it remains inadequately managed, particularly in low-resource settings. Pediatric palliative care (PPC) services are underdeveloped in many low- and middle-income countries, including …
Pediatric Palliative Care: A Retrospective Review from a Tertiary Cancer Center in North-Central India
Introduction
Pediatric palliative care (PPC) focuses on enhancing the quality of life for children with serious illnesses and their families; however, timely referral remains limited in resource-constrained settings. This audit was conducted to estimate the pr…
Pediatric Palliative Care Consultation in the PICU Following Out-of-Hospital Cardiac Arrest: Analysis of the U.S. Pediatric Health Information Systems Database, 2013-2023
Objectives:
Subspeciality pediatric palliative care (SPPC) team consultation is an integral component of comprehensive care provided to critically ill children. Little is known about the utilization of SPPC following out-of-hospital cardiac arrest (OHCA) in th…
Pediatric Palliative care: Evaluation of knowledge, experience and confidence among physicians in a university outpatient setting
Background Pediatric Palliative Care (PPC) is essential for improving the quality of life of children with life-threatening or life-limiting conditions and their families. Despite its growing relevance, PPC remains underexplored in medical education and clinic…
Pediatric Palliative Care Utilization Following Out-of-Hospital Cardiac Arrest at a Large US Quaternary Hospital
Objectives: Pediatric out-of-hospital cardiac arrest (OHCA) is associated with significant morbidity and mortality. Pediatric palliative care (PPC) services could provide an integral component of the comprehensive care necessary for these patients and their fa…
Pediatric Palliative Sedation Practices in the Intensive Care Unit
Background: Palliative sedation therapy (PST) is a tool that can mitigate suffering for dying patients. However, it is infrequently utilized, and little is known about the practice of PST in the intensive care unit (ICU).
Aim: To explore PST practices in pedi…
Pediatric Palliative Surgical Oncology: Principles, Practice, and Evolving Roles
Pediatric cancer care has changed dramatically over the past several decades, with survival rates increasing to nearly 85% across many childhood malignancies. Yet, despite these advances, children with cancer and their families continue to confront significant…
Pediatric Palliative Symptom Categories for (e)PROM in specialized pediatric palliative home care
CONTEXT: (Electronic) patient reported outcome measures ((e)PROMs) enable the systematic assessment of patients' health status and treatment needs. However, their targeted use in pediatric palliative home care (PPHC) remains limited, as existing instruments ar…
Perceived Challenges to Effective Pediatric Palliative Care in India: A Systematic Review
Pediatric palliative care aims to improve the quality of life for children with life-threatening diseases. The requirements and approach to pediatric palliative care differ greatly from adult palliative care. Palliative care has been introduced and grown in In…
Perceptions of Proactive Palliative Care Integration Among Pediatric Hematopoietic Cell Transplant Providers: A Pilot Study
Background: Pediatric hematopoietic cell transplantation (HCT) conveys significant risk of mortality, morbidity, impaired quality of life, and multifactorial distress. One potential strategy for improving experience and relieving suffering is proactive special…
Perinatal and Neonatal Palliative Care: Challenges and Contextual Solutions in Low- and Middle-Income Countries
ABSTRACT - Purpose: - The purpose of this review was to explore the primary obstacles to providing comprehensive, family-centered palliative care during the perinatal and neonatal period, using insights from existing literature and clinical practice. Backgroun…
Pilot Study of a Bereavement Referral Program for Parents Following Perinatal Death
Context: Following a perinatal death, parents experience physical, psychological, social, and spiritual hardships, and may benefit from community-based support.
Objectives: Study a new Bereavement Referral Program (BRP) that connects parents to community-base…
Positive impact of training and support on improving the proficiency of nurses providing palliative care to babies, children and young people in hospital
Children with life-limiting conditions are living for longer and with more complex conditions than ever before. It is estimated that there are more than 21.6 million babies, children and young people (children) in need of palliative care internationally.1 Ther…
Precision in Pediatric Palliative Care: Looking Ahead to the Next Twenty-Five Years
An interdisciplinary panel of pediatric palliative care (PPC) clinician-researchers including one of the early leaders in the field will begin by reflecting on the history of the field over the last 25 years and making a case for focusing on precision in PPC i…
Preferences and willingness to pay for palliative care among parents of children with cancer: a Discrete Choice Experiment
Purpose To quantify the preference of parents of children with cancer for palliative care (PC) in China to provide references for the development of service programs. Methods A discrete choice experiment (DCE) was used to explore preferences for PC among paren…
Prevalence and Trajectory of Household Material Hardship Among Children With Advanced Cancer
Background/Objectives: Families of children with advanced cancer living in poverty experience inferior outcomes including poor parent mental health and worse child quality of life. Household material hardship (HMH: food, housing, transportation, and/or utility…
Proceeding from a national workshop and future directions for pediatric palliative care research
The National Palliative Care Research Center (NPCRC) was founded in 2005 with the goal of strengthening the evidence base and developing research scholars in the field of palliative care. Given its accomplishments and adding extensively to the literature regar…
Prolonged grief and insomnia symptoms in cancer-bereaved parents: a latent class analysis
Parents who experience the death of a child may develop a range of mental health problems including insomnia and prolonged grief disorder (PGD). Insomnia symptoms predict worsening of prolonged grief symptoms and persons with more chronic insomnia trajectories…
Protective Factors Associated With the Loss of a Child due to Oncological Illness: Systematic Review
This systematic review explores factors influencing resilience and post-traumatic growth in parents who have lost a child under 25 to cancer. While such parents are vulnerable to complicated grief, not all experience it. Eight qualitative and mixed studies fro…
Quality Measure Considerations for Pediatric Palliative and End-of-Life Care
There is an emerging need to provide high-quality pediatric palliative care and end-of-life care to children, adolescents, and young adults with life-limiting illnesses. Currently, there are no standardized quality measures supporting pediatric palliative care…
Quality Measures for End-of-Life in Children with Heart Disease: A Modified Delphi Approach
Background How to define high quality end-of-life (EOL) care for children with advanced heart disease (AHD) is unknown. We sought to develop expert-panel endorsed quality measures (QM) for EOL for pediatric AHD. Methods The Modified Delphi panel methodology wa…
Quality of care metrics contributing to the development, implementation, and evaluation processes of telehealth solutions in home-care settings for paediatric palliative care: protocol for a systematic literature review
Paediatric palliative care (PPC) aims to improve the quality of life of children with life-limiting and life-threatening conditions. PPC addresses the needs of both the child and family and preferably starts immediately after a palliative diagnosis. It include…