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 2776–2800 of 4332 publications
Towards person-centred quality care for children with life-limiting and life-threatening illness: Self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study
BACKGROUND: Paediatric life-limiting and life-threatening conditions (life-limiting conditions) place significant strain on children, families and health systems. Given high service use among this population, it is essential that care addresses their main symp…
Transforming a Face-to-Face Legacy Intervention to a Web-Based Legacy Intervention for Children With Advanced Cancer
Research is needed to examine new and innovative web-based intervention delivery methods that are feasible, cost-effective, and acceptable to children and their families to increase access to palliative care services in the home and community. Our previous wor…
Transitional Care for Young People with Neurological Disorders: A Scoping Review with A Focus on Patients with Movement Disorders
Childhood-onset movement disorders represent a heterogenous group of conditions. Given the complexity of these disorders, the transition of care from pediatric to adult medicine is an important consideration. We performed a scoping review of the literature on …
"Transition from children's to adult services for adolescents/young adults with life-limiting conditions: developing realist programme theory through an international comparison"
BACKGROUND: Managing transition of adolescents/young adults with life-limiting conditions from children's to adult services has become a global health and social care issue. Suboptimal transitions from children's to adult services can lead to measurable advers…
Transition to a Primary Palliative Care Model in the NICU (FR441B)
Objectives: * Compare the benefits of a primary palliative care model to those of a specialty palliative care service. * Propose a stepwise process to initiate the transition from a specialty palliative care service to a primary palliative care service. * Iden…
Translating Pediatric Hospital Interpreters' Feedback From Difficult Conversations into Improved Communication
BACKGROUND: Medical interpreters are critical mediators in communication with pediatric subjects and families to include participation in difficult conversations. OBJECTIVE: The objective of this pilot study was to provide suggestions from medical interpreters…
Transporting critically ill children
The centralization of paediatric critical care services in most developed countries has seen an increase in the need for critically unwell and traumatically injured children to be transported for definitive care. This, in combination with the rising demand for…
Trauma to Transformation: the lived experience of bereaved parents of children with chronic life-threatening illnesses in Singapore
Background: In 2016, over 6.6 million children died globally, and 245 children died in Singapore. Chronic illnesses are prevalent causes of child mortality around the world. Despite growing research that examines the lived experience of parents bereaved by the…
Treatment limitation and advance planning: Hospital-wide audit of paediatric death
AIM: To examine paediatric deaths following withdrawal or withholding of medical treatment (WWMT) from a hospital-wide perspective and identify changes over a 10 year period. METHODS: A retrospective review of medical records was conducted for all paediatric i…
Undernutrition as an Aggravating Risk for Hospital Death in Critically Ill Children with Cancer
OBJECTIVES: Undernourished children with cancer are at major risk for adverse outcomes. We intended to model nutritional status as risk factor for hospital death. METHODS: Retrospective analysis of two cohorts of children admitted in an oncology/hematology int…
Undernutrition at PICU Admission Is Predictor of 60-Day Mortality and PICU Length of Stay in Critically Ill Children
BACKGROUND: There are few studies that assess the role of different nutritional assessment variables at pediatric intensive care unit (PICU) admission in predicting clinical outcomes. OBJECTIVE: To identify nutritional variables in the first 4 days of PICU sta…
Understanding the Intersection of Pediatric Palliative Care and Child Abuse Pediatrics (GP716)
Objectives: * Describe a framework for understanding circumstances in which Pediatric Palliative Care providers may encounter child abuse or neglect. * Explain the need for future investigations into the overlap of PPC and CPT/CPS. Importance: The intersection…
Understanding Young People and Their Care Providers' Perceptions and Experiences of Integrated Care Within a Tertiary Paediatric Hospital Setting, Using Interpretive Phenomenological Analysis
INTRODUCTION: Benefits of integrated care include improved health outcomes and more satisfaction with experiences of care for consumers. For children and young people with chronic and complex health conditions, their care may be fragmented due to the multitude…
Unrealistic parental expectations for cure in poor-prognosis childhood cancer
Background: Many parents of children with advanced cancer pursue curative goals when cure is no longer possible. To the authors' knowledge, no pediatric studies to date have prospectively evaluated prognosis communication or influences on decision making in po…
Upping my game as a parent: Attributed gains in participating in a cancer parenting program for child-rearing parents with advanced cancer
OBJECTIVES: The objective of this study was to describe in the words of child-rearing parents with incurable cancer, what they had gained or thought about as a result of participating in a five-session, scripted, telephone-delivered psycho-educational parentin…
Use of a Mortality Prediction Model in Children on Mechanical Ventilation: A 5-Year Experience in a Tertiary University Hospital
PURPOSE: Currently, several scoring systems for predicting mortality in severely ill children who require treatment in a pediatric intensive care unit (PICU) have been established. However, despite providing high-quality care, children might develop complicati…
Use of oral cannabis extracts in the pediatric palliative care setting: A retrospective chart review
Use of Palliative Care Consultation Services for Infants With Life-Threatening Conditions in a Metropolitan Hospital
BACKGROUND: Palliative care is becoming an important component for infants with life-limiting or life-threatening conditions and their families. Yet palliative care practices appear to be inconsistent and sporadically used for infants. PURPOSE: The purpose of …
Use of standardized body composition measurements and malnutrition screening tools to detect malnutrition risk and predict clinical outcomes in children with chronic conditions
BACKGROUND: Better tools are needed to diagnose and identify children at risk of clinical malnutrition. OBJECTIVES: We aimed to compare body composition (BC) and malnutrition screening tools (MSTs) for detecting malnutrition on admission; and examine their abi…
Use of subcutaneous fluids in palliative care with children: a case study
Quality of life is a major consideration in children's palliative care, particularly at the end of life. Optimal symptom management is crucial in maintaining quality of life, with the aim being to ensure the child is as comfortable as possible. Ensuring adequa…
Using Patient-Reported Outcomes to Measure Symptoms in Children With Advanced Cancer
BACKGROUND: Children with advanced cancer experience symptoms despite access to quality care. Symptom research has previously relied upon retrospective designs and parent proxy rather than prospective measurement with self-report. OBJECTIVE: This study evaluat…
Using web-based training to optimize pediatric palliative care knowledge transfer
Nurses play a central role in delivering palliative care, given their influence on the quality of care provided (Montgomery, Sawin, & Hendricks-Ferguson, 2016). They are professionals of choice when it comes to assessing disease symptoms or psychological distr…
Validation of an Electronic Pediatric Index of Mortality 2 Score in a Mixed Quaternary PICU
OBJECTIVE: To assess the validity of an electronic version of the Pediatric Index of Mortality 2 score. DESIGN: Retrospective observational study. SETTING: Pediatric and cardiac ICUs at a quaternary medical center. PATIENTS: Patients more than 60 days old admi…
Values clarification: Eliciting the values that inform and influence parents' treatment decisions for periviable birth
BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). OBJECTIVE: We piloted values clarification exercises to info…
Valuing life and evaluating suffering in infants with life-limiting illness
In this paper, we explore three separate questions that are relevant to assessing the prudential value of life in infants with severe life-limiting illness. First, what is the value or disvalue of a short life? Is it in the interests of a child to save her lif…