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 1–25 of 79 publications
Comparison of early versus late palliative care integration in pediatric onco-critical care: Single-center retrospective study from South India
Background: Children with life-limiting illnesses in onco-critical care often face severe symptoms and complex end-of-life decisions. Early palliative care (PC) may enhance symptom management, quality of life (QOL), and resource utilization. This study aimed t…
Culturally Informed Communication of Neonatal Death in Chinese Neonatal Intensive Care Units
This qualitative study describes the experiences of physicians and nurses about communicating with parents about neonatal death at 2 neonatal intensive care units (NICUs) in 2 hospitals in Yangzhou City, Jiangsu Province, China. Key Points: Question: What are …
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…
A RETROSPECTIVE AUDIT FOR PRE-HOSPITAL RESPECT DOCUMENTATION FOR CHILDREN WITH COMPLEX LIFE LIMITING NEURO-DISABILITY ADMITTED TO PAEDIATRIC INTENSIVE CARE UNIT
Objectives As per NICE guidelines [NG 61], children and young people with life limiting conditions and their carers or parents should have enough time and opportunities for discussions about difficult decisions around end-of-life care. A retrospective audit of…
Bereavement, Palliative, and End-of-Life Education Needs Assessment
INTRODUCTION: Nationally, over 45,000 children die each year with nearly 75% of those dying in hospitals and 80% of hospital deaths occurring in the Pediatric Intensive Care Unit (PICU). CHRISTUS Children's is among an estimated 20% of children's hospitals tha…
Everything But: A Case Series of Strategies to Care for the Pediatric Chronically, Critically Ill Patient and Family
Outcomes: 1. Use strategies to understand family's hopes, wishes and worries for their chronically and often critically ill child and what they perceive to be prolonging life versus prolonging death. 2. Utilize specific language to make recommendations to help…
Knowledge, attitudes and practices of critical care unit personnel regarding pediatric palliative care: a cross-sectional study
Background: Few studies have evaluated the perceptions of healthcare providers in China regarding pediatric palliative care, particularly in critical care units (PICUs), where many children receive palliative care. To evaluate the knowledge, attitudes and prac…
Navigating the shadows: medical professionals' values and perspectives on end-of-life care within pediatric intensive care units in Croatia
Background and aim: This study explores healthcare professionals' perspectives on end-of-life care in pediatric intensive care units (ICUs) in Croatia, aiming to illuminate their experiences with such practices, underlying attitudes, and major decision-making …
Palliative Care Outcomes for Critically ill Children After Rapid Whole Genome Sequencing
Abstract
Objectives: Clinical utility of rapid whole genome sequencing (rWGS) has been reported in 30-70% of pediatric ICU patients who receive a molecular diagnosis. Rapid molecular diagnostic techniques have been increasingly integrated into critical care, y…
Preparing for the Unimaginable: How Pediatric ICU Nurses Prepare Families for the Dying Process
Outcomes: 1. Identify key actions that help prepare families for the dying process. 2. Consider how the defined key actions may apply to other settings of practice. Key Message: Preparing families for end-of-life symptoms and circumstances may help minimize ad…
Racial and Ethnic Disparities in End-of-Life Care of Children Undergoing Terminal Extubation in ICU
INTRODUCTION: Among elderly adults, significant racial disparities in hospice and end-of-life treatment intensity have been shown. This single-center secondary analysis was performed on data collected as part of the DONATE (Death One Hour After Terminal Extuba…
Spiritual Care in PICUs: A U.S. Survey of 245 Training Fellows 2020-2021*
OBJECTIVES:
To understand the perspectives of pediatric fellows training in critical care subspecialties about providing spiritual care.
DESIGN:
Cross-sectional survey of United States National Residency Matching Program pediatric fellows training in critical…
Supporting parents while their child is receiving neurocritical care
The post-intensive care syndrome (PICS) concept whereby the ICU experience of the patient as well as their family can have long-term deleterious health outcomes in both the patient and the family provides a rationale and impetus for modifying the ICU experienc…
The Effect on the Care Behaviors of Nurses Working in Intensive Care Clinics of Moral Distress Experienced During End of Life Patient Care
This research was conducted as a descriptive study in order to examine the effects of the moral problems experienced by nurses working in intensive care clinics on their end of life care behaviors. The data were collected using the Moral Distress Scale and Car…
The elements of end-of-life care provision in paediatric intensive care units: a systematic integrative review
Background: Deaths in paediatric intensive care units (PICUs) are not uncommon. End-of-life care in PICUs is generally considered more challenging than other settings since it is framed within a context where care is focused on curative or life-sustaining trea…
Understanding PICU Mortality and Family Bereavement: A Singlr- Canter Qualitative Study
INTRODUCTION: Pediatric mortality is an often underestimated and overlooked figure but has significant impact on providers and families. University Hospitals Rainbow Babies and Children has launched a program to identify factors surrounding pediatric mortality…
Voices of experience: insights from Dutch parents on periviability guidelines and personalisation
OBJECTIVE: To investigate the perspectives of experienced parents regarding guidelines and personalisation for managing imminent extremely premature births (22-26 weeks gestational age (GA)) . The study examined four scenarios: no guideline, a guideline based …
End of life care in the setting of extreme prematurity - practical challenges and ethical controversies
While the underlying principles are the same, there are differences in practice in end of life decisions and care for extremely preterm infants compared with other newborns and older children. In this paper, we review end of life care for extremely preterm inf…
Implementation of an Innovative Palliative Care Screening Tool in the Pediatric Intensive Care Unit: A Pilot Study
Background: Pediatric palliative care (PPC) can improve the quality of care provided to critically ill children with a high risk of morbidity and mortality. Early identification of patients admitted to the pediatric intensive care unit (PICU) who may benefit f…
Intractable Feeding Intolerance in Children With Severe Neurological Impairment: A Retrospective Case Review of Nine Children Known to a Pediatric Palliative Care Service
BACKGROUND: Intractable feeding intolerance in children with severe neurological impairment (SNI) is poorly defined and understood.
OBJECTIVE(S): (1) To describe 9 children with SNI, where intractable feeding intolerance was thought to be a contributor to thei…
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