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 776–800 of 4332 publications
When Children Repeatedly Defy the Odds
"Marcoa is an 11-year-old boy with an invasive neck tumor. Since his diagnosis four years ago, he has undergone five high-risk resections to maintain his airway, most recently with placement of a tracheostomy. He has been hospitalized repeatedly in the intensi…
When Is Intensive Care Warranted for the Most Immature Infants?
Abstract
Withholding or starting, withdrawing or continuing, high-technology interventions available to extremely premature newborns is a fundamental challenge in obstetrics and neonatology. Attempting to save an infant's life is a judgment fraught with uncert…
When is that moment? The criteria for withdrawing treatment from terminally ill children - in the context of the recurring problem of "passive euthanasia"
Abstract
Introduction and objective: The article aims to formulate criteria determining the right moment to discontinue life support to a terminally ill child at the end of life. The argument refers to two standards guiding critical decision-making: medical fu…
Where comfort and nutrition meet: A case series of children with severe neurologic impairment receiving home parenteral nutrition at the end of life
Home parenteral nutrition (HPN) is a life-sustaining therapy traditionally used as a bridge to enteral autonomy or intestinal transplantation. Increasingly, it is used for intractable feeding intolerance (IFI), which can occur near the end of life (EOL) in chi…
Who You Gonna Call? Ethical Conundrums in Pediatric End-of-Life Care
Pediatric end-of-life cases require a nuanced response to complex challenges (e.g., limits of parental authority, duty of child protection, and the inherent ambiguity–even impracticality–of the best interest standard). This is especially the case in the neonat…
Wish-Granting Interventions Promote Positive Emotions in Both the Short and Long Term in Children with Critical Illnesses and Their Families
Background: Wish-granting interventions are recognized as positive experiences for children with critical illness and their families. While the positive effects have been shown in the immediate and short term, data on their long-term effects are lacking.
Obje…
Withdrawal of Life-Sustaining Treatment in Children Managed in Nine PICUs in the United States: A Secondary Analysis of the Death One Hour After Terminal Extubation (DONATE) Dataset, 2009-2021
Objectives:
To describe medical management surrounding withdrawal of life-sustaining therapy (WLST) in nine U.S. PICUs.
Design:
Retrospective, secondary analysis of the “Death One Hour After Terminal Extubation” (DONATE) cohort (2009–2021) assessing usage pat…
A 15-year experience in pediatric palliative care: a retrospective hospital-based study
BACKGROUND: The current Italian scenario of pediatric palliative care (PPC) services is characterized by inadequate coverage of the territory. Therefore, it is important to improve the referral of patients to the most appropriate setting (community care, gener…
Access to legacy-oriented interventions at end of life for pediatric oncology patients: A decedent cohort review
Background: Legacy-oriented interventions have the potential to offer pediatric oncology patients and families comfort at end of life and during bereavement. Certified child life specialists often provide these services, and presently little is known about whe…
Acute and Persistent Postoperative Functional Decline in Children with Severe Neurological Impairment: A Qualitative, Exploratory Study
Background: Children with severe neurologic impairment (SNI) regularly require major surgery to manage their underlying conditions. Anecdotal evidence suggests that children with SNI experience unexpected and persistent postoperative functional changes long af…
A Dialogue between Hindu and Catholic Perspectives in Taking Care of Newborns at their End-of-Life
Hinduism is considered one of the most ancient religions in the world. Although the technological innovation of modernization has undermined the reliance on their traditions, Hindus may still rely on Hindu Scripture when making decisions. From their standpoint…
A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment
BACKGROUND: Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family members. High quali…
Advance Care Planning and Parent-Reported End-of-Life Outcomes in the Neonatal Intensive Care Unit
Objective: This study aimed to evaluate the impact of advance care planning (ACP) on parent-reported end-of-life (EOL) outcomes in the neonatal intensive care unit (NICU).
Study design: Single-center, cross-sectional mixed-methods survey study of bereaved par…
Advance Care Planning for Children With Rare Diseases: A Pilot RCT
Background and objective: Pediatric rare diseases are often life-limiting conditions and/or require constant caregiving. Investigators assessed the initial efficacy of the FAmily CEntered (FACE) pediatric advance care planning (pACP), FACE-Rare, intervention o…
Advancing Advance Care Planning: Evaluating a Revised Version of Voicing My CHOiCES
Introduction: Voicing My CHOiCES (VMC) is an advance care planning (ACP) guide designed to assist adolescents and young adults (AYAs) with serious illness in communicating their care preferences to others. This study evaluated a revised version of VMC. Methods…
A Feasibility Study Examining Storytelling Through Music with Bereaved Parents of Children with Cancer (RP212)
Outcomes: 1. Participants will be able to demonstrate knowledge about the gaps in parental bereavement support. 2. Participants will be able to describe the feasibility and process of implementing a community-based expressive arts bereavement intervention. Key…
Aggressiveness of Care at the End of Life of Children Dying with Cancer in Public Hospitals-A Nationwide Retrospective Cohort Study
Background: Little is known about the aggressiveness of cancer care at the end of life (ACCEoL) for children with cancer in countries where palliative care (PC) is scarce. Objective: The aim of this study was to determine the frequency and time trends of ACCEo…
A Hard Start: Early, Intensive Healthcare Utilization for Children with Critical Congenital Heart Disease
Introduction/Background: Critical congenital heart disease CCHD, requiring surgical intervention in the neonatal period, confers significant morbidity including high healthcare utilization, symptom burden, and psychosocial difficulties. Families also face the …
A Nationwide Study to Evaluate Accessibility to Specialized Pediatric Palliative Care in Italy-Patients, Needs, and Critical Issues: The PalliPed Study
Background: PalliPed is the first Italian nationwide project aimed at describing the characteristics of patients accessing specialized pediatric palliative care (PPC) and their families, in the main care settings (hospice, home care, and hospital). The project…
An Evolutionary Concept Analysis of Pediatric Hospice and Palliative
Purpose: This study aimed to clarify the concept of pediatric hospice and palliative care through conceptual analysis. It also sought to identify the differences between related concepts such as pediatric death care and pediatric spiritual care, in order to pr…
An exploration of managing emotional labour and maintaining professional integrity in children's hospice nursing
BACKGROUND: Research exploring nurse-parent relationships in children's hospices is rare. AIM: To investigate how children's hospice nurses manage emotional labour and professional integrity in their long-term relationships with parents. METHODS: A purposive s…
An exploration of women's lived experiences of care and support following perinatal death in South-Western Nigeria: A hermeneutic phenomenological study
BACKGROUND: Perinatal death results in long-lasting intense grief for bereaved mothers with a potential to negatively impact on their short- and long-term outcomes and quality of life if inadequately supported in coping with and managing their experience.
AIM:…
An Online Pediatric Palliative Care Education and Mentoring (Project ECHO) in Nepal: A Program Implementation Case Study and Assessment of Changes in Healthcare Providers' Knowledge, Confidence, and Attitudes
OBJECTIVES: The goal of this implementation study was to describe the implementation and evaluation of the impact of an online pediatric palliative care training program in Nepal, using the Project ECHO model. METHODS: The study used mixed methods, including a…
A Phenomenological Study of Clinical Stillbirth Management for Grieving Mothers
For any expectant mother, the worst possible outcome of pregnancy is for the baby to die. The experience can lead to various forms of physical and psychosocial morbidity. The purpose of this study was to gain in-depth understanding of the experiences of mother…
A Pilot of a Telehealth-Hospice Transition Intervention for Children and Young Adults with Cancer
Background and aims: Telehealth can improve care for patients with progressive cancer enrolling in hospice. Coordinated telehealth visits (patient/family-hospital-hospice) may improve communication, satisfaction with and interdisciplinary hospice collaboration…