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 560 publications
Study protocol to develop bereavement care package for the Indian healthcare system to support parents of stillborn babies
Background: India is estimated to have the largest number of stillbirths globally. Although the health system in India has made significant strides in maternal and newborn care, the bereavement needs of the parents’ experiencing stillbirth have not received at…
Tele-advocacy and Bioethics During the Pandemic: A Telehealth Approach in Perinatal-neonatal Care for Mitigating Ethical and Moral Tensions at a Safety-net Hospital
Our neonatal intensive care unit (NICU) serves an underprivileged population in a resource-restricted environment. The recent COVID-19 pandemic and rapidly changing institutional protocols accentuated the challenges of caring for critically ill newborns. Concu…
The experiences of nursing and midwifery students with end-of-life care in Neonatal Intensive Care Units: A qualitative descriptive exploratory study
Background: Research on nursing and midwifery students' experiences with end-of-life care in Neonatal Intensive Care Units (NICUs) is limited, indicating the need for deeper exploration. Understanding their experiences and educational needs may inform curricul…
The First 13 Years of "Percorso Giacomo": Patients' Outcomes
Objectives: To report the outcomes of a population of fetuses and neonates with life-limiting (LL) or life-threatening (LT) diagnoses leading to adverse prognoses cared for by a service of perinatal palliative care (PPC), the Percorso Giacomo (PG). Study desig…
Through the nurse's lens: Bereavement photography and creative interventions in nursing care
Art has long supported healing, and, in nursing, creative practices such as music, writing, and photography enhance holistic care by fostering connection, emotional well-being, and comfort during end-of-life moments. Bereavement photography, particularly in ne…
Trends and Causes of Neonatal Mortality in Canadian Neonatal Intensive Care Units
Objective To determine patterns and causes of neonatal deaths in Canadian neonatal intensive care units (NICUs) over the last decade. Study design All neonatal deaths reported by NICUs participating in the Canadian Neonatal Network 2010-2022 were divided retro…
Trends in Palliative Care Consultation for Extremely Premature Neonate Nonsurvivors in the Intensive Care Unit
Background: Extremely premature infants (<28 weeks gestational age) have a greater risk of mortality and, when they survive, higher rates of significant neurological disability and need for medical care. As a result, extremely premature infants and their famil…
Use of palliative care services in NICU patients undergoing tracheostomy: Enhancing decision-making and care with an underutilized discipline
Introduction: Palliative care provides a proactive, family-centered approach for infants with life-threatening conditions. We examined the frequency of palliative care consultations among NICU tracheostomy patients and their associated demographics, hypothesiz…
Values in the Neonatal ICU: Insights into Caregiver Priorities
Objectives: To identify and prioritize caregiver values related to high-quality care for infants hospitalized in the neonatal intensive care unit (NICU) and to examine variation in these values by caregiver and clinical characteristics.
Study design: Sixteen …
What are fathers' experiences of neonatal-perinatal palliative care? A Scoping review
Whilst there is a burgeoning body of research exploring parental experiences of neonatal-perinatal palliative care, a major limitation is fathers’ under-representation as research study participants. The paucity of literature relating to fathers’ experiences m…
When facts are not fixed: rethinking shared decision making at the margins of neonatal viability
Parents and doctors face difficult decisions when a baby is born at the borderline of viability. Somehow, they must voice their values, shared concerns, and disagreements in a way that allows an initial decision about life-sustaining treatment to be made quick…
Ambiguous Loss: Implications for Perinatal and Neonatal Nurses
Abstract
Death and grieving are regular events in the human lifecycle, and the rituals associated with the loss bring closure to dear ones. Ambiguous loss, a term coined by Pauline Boss, is a state in which there is no actual "death" and, therefore, no "grievi…
Analysis of the surprise question as a tool for predicting death in neonates
The Surprise Question "Would you be surprised if the patient died in the next 12 months?" lacks pediatric research, particularly in neonatal patients. Our study aims to analyze the Surprise Question's predictive ability in neonates and explore pediatricians' v…
A network analysis of timing and conditions present at time of death for periviable infants (22+0-23+6 weeks) admitted to neonatal intensive care after receiving survival-focused care at birth
Introduction: Advances in neonatal care have resulted in improved survival rates for periviable infants (22 + 0–23 + 6 weeks) with increasing numbers being admitted to neonatal intensive care units across the United Kingdom. Qualitative research evidences the …
A Quality Improvement Approach to Perinatal Palliative Care: Using Standardized Criteria and Education to Increase Early NICU Palliative Care Consultation
Background: Perinatal palliative care (PC) provides comprehensive, interdisciplinary, and planned care for infants with life-limiting or chronic critical conditions. Poor utilization of PC services was seen at our Level IV neonatal intensive care unit (NICU), …
A structured comparison and reflection on international position statements and professional guidance for the management of periviable infants
Background: Survival rates and clinical approach to periviable infants are rapidly evolving at certain centres, but there remains variation in definition, approach and management of these infants worldwide. This review aims to narratively review and discuss pr…
Consulting With First Nations Communities to Develop Text-Based Support for Grieving Fathers
BACKGROUND: The loss occasioned through miscarriage, stillbirth or neonatal death is recognised as a traumatic event causing grief and sorrow in fathers. While the rate of Indigenous perinatal deaths is almost twice that of non-Indigenous, there is little supp…
Cooling facilities in paediatric palliative care: a ritual form of mourning? A scoping literature review
Parental grief is often found to be more intense and prolonged than other types of loss. Cooling facilities such as air-conditioned rooms or cold cots can allow parents to spend more time with their child by slowing the body’s decomposition. Similar to other b…
Culturally and linguistically diverse men’s grief experiences following perinatal death in Australia
To explore the grief experiences of men from culturally and linguistically diverse (CALD) backgrounds following perinatal death in Australia. Qualitative analysis of interview data using thematic analysis. Participants were health service providers (n = 6), an…
Design, Implementation, and Evaluation of a Multidisciplinary Palliative Care Curriculum for Obstetrician Gynecologist Residents
Abstract: Palliative care focuses on providing relief from the stress and symptoms of serious illness. Obstetrician gynecologists (OBGYNs) manage a variety of complex clinical situations ranging from delivering a cancer diagnosis to caring for a neonatal demis…
Development and results of perinatal palliative care program: a retrospective cohort study
Purpose
From September 2014 to April 2016, the project “Let me be” was carried out by Gajusz Foundation. We aimed to inform clinical practice by describing a model of perinatal palliative care and to determine who is referred for care, what happens after refer…
Dobbs-driven expansion of perinatal palliative care: a scoping review of the evidence and its limits
As abortion care restrictions increase, a growing population is continuing pregnancies complicated by life-limiting fetal conditions, making it more critical than ever to evaluate the state of the evidence in perinatal palliative care (PPC). Perinatal palliati…
Effectiveness of a Diagnosis Trigger List on Increasing the Integration of Palliative Care in the Neonatal Intensive Care Unit
Background: Palliative care is underutilized in the neonatal intensive care unit (NICU). Many patients who qualify for palliative care in the NICU are not being referred.
Purpose: The project's purpose was to promote the integration of palliative care in the …
Empowering Parents in Neonatal Decision Making Using Q-Methodology: Development Of a Decision Guidance Framework for Necrotizing Enterocolitis
Background/objectivesGiven the high risk of peri-operative mortality and postoperative morbidities in surgical necrotizing enterocolitis (NEC), parents are faced with an extraordinarily difficult and emotionally charged decision. Together with healthcare profe…