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 79 publications
Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: A qualitative study
Background: Medical advances have led to new challenges in decision-making for parents of seriously ill children. Many parents say religion and spirituality (R&S) influence their decisions, but the mechanism and outcomes of this influence are unknown. Health c…
From "Longshot" to "Fantasy": Obligations to Pediatric Patients and Families When Last-Ditch Medical Efforts Fail
Clinicians at quaternary centers see part of their mission as providing hope when others cannot. They tend to see sicker patients with more complex disease processes. Part of this mission is offering longshot treatment modalities that are unlikely to achieve t…
Impact of child death on paediatric trainees
OBJECTIVE: To assess the prevalence of symptoms of acute stress reactions (ASR) and post-traumatic stress disorder (PTSD) in paediatric trainees following their involvement in child death. DESIGN: A survey designed to identify trainees' previous experiences of…
Impact of the Regional Pediatric Palliative Care Network on the Care of Children on Long-Term Ventilation: Could the Availability of a Residential Solution into the Network Reduce the Duration of Intensive Care Unit Staying for These Patients?
The prevalence of children on long-term ventilation (LTV) at home has increased in many countries. In Italy, there are 4.3/100,000 population younger than 18 years. Pediatric palliative care (PPC) network provides high-level care for these patients. In Decembe…
Pccm fellows' palliative care knowledge and attitudes surrounding a pilot educational initiative
Learning Objectives: The importance of Palliative and End of Life Care (PC, EOL) for children in the PICU with life-limiting, chronic conditions is increasingly recognized (1). Robust PC improves outcomes by symptom score, cost, and length of life (2-4). Pedia…
PICU and palliative care partnership to standardize family meetings and decrease ICU readmission rates
Program Goals: The American College of Critical Care Medicine Task Force, 2004-2005 recommends "family meetings with the multi-professional team begin within 24-48 hours after ICU admission and are repeated as dictated by the condition of the patient with inpu…
Survey on Neonatal End-of-Life Comfort Care Guidelines Across America
Context: Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing neonatal com…
The Nesting Dolls Design: A Methodology for the Recruitment of Bereaved Parents for Partnership Activities Related to Palliative Care and Bereavement Support in Paediatric Psycho-Oncology
Objectives: 1) Fill the knowledge gaps about best practices related to collaboration with bereaved families in projects related to end-of-life practices, palliative care and parental bereavement in paediatrics. 2) Identify best practices for establishing safe …
Using entrustable professional activities to assess graduation readiness in pediatric critical care
Learning Objectives: Assessing competence in pediatric critical care medicine (PCCM) training is challenging, and Entrustable Professional Activities (EPAs) were recently introduced to enhance the assessment process. There are 7 EPAs that define the tasks expe…
Moral distress in PICU and neonatal ICU practitioners: A cross-sectional evaluation
Objectives: To measure the level of moral distress in PICU and neonatal ICU health practitioners, and to describe the relationship of moral distress with demographic factors, burnout, and uncertainty. Design: Cross-sectional survey. Setting: A large pediatric …
[Retrospective study of children referred from paediatric intensive care to palliative care: Why and for what]
INTRODUCTION: The creation of paediatric palliative care units (PPCU) could optimise the management of children with palliative focus after admission to a paediatric intensive care unit (PICU). This study describes the clinical and epidemiological characterist…
Chronic critical illness in infants and children: A speculative synthesis on adapting ICU care to meet the needs of long-stay patients
Objectives: In this review, we examine features of ICU systems and ICU clinician training that can undermine continuity of communication and longitudinal guidance for decision making for chronically critically ill infants and children. Drawing upon a conceptua…
Dying later, surviving longer
Most children who die in the UK have an underlying chronic illness, and the majority of these deaths take place in a paediatric intensive care unit (PICU).1 The overall community burden of paediatric chronic illness is increasing as the population expands and …
Is it taking longer to die in paediatric intensive care in England and Wales?
Introduction All-cause infant and childhood mortality has decreased in the UK over the last 30 years. Advances in paediatric critical care have increased survival in paediatric intensive care units (PICUs) but may have affected how and when children die in PIC…