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 176–200 of 560 publications
The Effect of Neonatal Intensive Care Nurses' Attitudes Towards Palliative Care on Death Anxiety and Burnout: An Analytic Cross-Sectional Study
This study aimed to determined the effect of neonatal intensive care nurses' attitudes towards palliative care on death anxiety and burnout. This was an analytic cross-sectional study conducted with 215 neonatal intensive care nurses working a children's hospi…
The knowledge, attitude and behavior on the palliative care among neonatal nurses: what can we do
Background: Neonatal nurses should provide timely and high-quality palliative care whenever necessary. It's necessary to investigate the knowledge, attitude and behavior of palliative care among neonatal nurses, to provide references and evidences for clinical…
The Role of Midwives in US Perinatal Palliative Care: A Scoping Review
Abstract
Introduction: Perinatal palliative care (PPC) is a rapidly growing and essential reproductive health care option for pregnant persons with a diagnosed life-limiting fetal condition who continue their pregnancy. The provision of PPC is within the scope…
The Special Delivery Unit: A Novel Concept for Mother-Baby Continuity for Major Fetal Abnormalities
Objective: This article describes the experience in the planning and development of a special delivery unit (SDU) at our free-standing children's hospital in Austin, Texas.
Study design: Description of various aspects of the development of the SDU. In additio…
THE WEST MIDLANDS PERINATAL PALLIATIVE CARE SERVICE AUDIT ON REFERRALS, DIAGNOSES AND PROGNOSES OF BABIES WITH SEVERE CONDITIONS
Objectives The West Midlands Perinatal Palliative Care Service based at Birmingham Women's and Children's NHS Hospital Trust is one of the busiest services in the UK after being in operation only 2 years. The service offers support to all West Midlands hospita…
Utility of do-not-resuscitate orders for critically ill infants in the NICU
Objective: To better understand the value of DNR orders for critically ill infants in the NICU.
Methods: A prospective mixed-methods approach was utilized including chart review of infants who died in a regional NICU over a twenty-six-month period and surveys…
What Families of Children With Medical Complexity Say They Need: Humanism in Care Delivery Change
There is growing consensus that centering lived experience is needed to meaningfully transform the burdensome systems of care for children with medical complexity (CMC) and their families. The Collaborative Improvement and Innovation Network to Advance Care fo…
Accessibility and challenges of perinatal palliative care in Poland
Background: This article examines the legal status and level of accessibility to perinatal palliative care (PPC) in Poland, with a focus on the number of services provided and the number of parents receiving PPC services. Material(s) and Method(s): The desk re…
Bereaved mothers' experience of expressing and donating breast milk: An interpretative phenomenological study
Abstract
Perinatal loss is a devastating event for any mother. What is often overlooked is a mothers continued ability to lactate following the death of her child. Donor breast milk is a commodity highly sought after given its value for feeding sick babies res…
Characteristics of Critically Ill Infants at the End of Life in the Neonatal Intensive Care Unit
Objectives: About 16,000 infants die in the neonatal intensive care unit (NICU) each year with many experiencing invasive medical treatments and high number of symptoms.1 To inform better management, we characterized diagnoses, symptoms, and patterns of care a…
Chinese Neonatal Nurses' Lived Experiences of Providing End-of-Life Care in the NICU: A Descriptive Phenomenological Study
Background: Although end-of-life care (EOLC) has been well-studied, the experience of neonatal intensive care unit (NICU) nurses in China, where little EOLC training is provided, requires further investigation.
Purpose: To explore the lived experience of EOLC…
Clinician perception of care at the end of life in a quaternary neonatal intensive care unit
INTRODUCTION: Care for neonates at the end of life (EOL) is often challenging for families and medical teams alike, performed suboptimally, and requires an experienced and compassionate clinician. Much literature exists on adult and pediatric EOL care, but lim…
Components of Perinatal Palliative Care: An Integrative Review
When a severe diagnosis is made before or after birth, perinatal\
Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement
BACKGROUND: Neonatal death is often preceded by end-of-life medical decisions. This study aimed to determine whether the context of death - after a decision of withholding or withdrawing life-sustaining treatment (WWLST) or despite maximum care - was associate…
Data-driven approach to understanding neonatal palliative care needs in England and Wales: a population-based study 2015-2020
Abstract
Objective To quantify admissions to neonatal units in England and Wales with potential need for palliative care.
Design, setting and patients Diagnoses and clinical attributes indicating a high likelihood of requiring palliative care were mapped to c…
Decisions concerning resuscitation and end-of-life care in neonates. Bioethical aspects (Part II)
Coping with the death of a newborn infant requires training and reflection regarding the end-of-life decision-making process, communication with the family, and the care to be provided. The objective of this article is to analyze in depth the salient aspects o…
Diversity of Parent Emotions and Physician Responses During End-of-Life Conversations
BACKGROUND AND OBJECTIVES: To provide support to parents of critically ill children, it is important that physicians adequately respond to parents' emotions. In this study, we investigated emotions expressed by parents, physicians' responses to these expressio…
End-of-life care in neonatal intensive care units in Iberoamerica: A look from the nursing perspective
Introduction: End-of-life care (ELC) represents a quality milestone in neonatal intensive care units (NICU). The objective of this study was to explore how ELC are carried out in NICUs in Iberoamerica.
Methods: Cross-sectional study, through the administratio…
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…
Ethics at the end of life in the newborn intensive care unit: Conversations and decisions
The unexpected birth of a critically ill baby raises many ethical questions for neonatologists. Some of these are obviously ethical questions, about whether to attempt resuscitation, and, if the baby is resuscitated and survives, whether to continue life susta…
Ethics Roundtable: How Much is Too Much?
How should the medical team approach care for a very preterm infant with a significant painful and life-limiting condition when the parents wish to pursue all life-sustaining therapies? Here, we discuss a case of an infant born at 28 weeks' gestation with a di…
Evaluation of learning transfer after a perinatal/neonatal palliative care virtual training course
BACKGROUND: The success of a training can be determined by the degree of learning transfer. To address a gap in educational offerings during the pandemic, an interdisciplinary team developed and offered a 3-day virtual course, called Next Level Perinatal Palli…
Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study
Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities can turn what was hoped to be a very exciting moment in a family's life into one of despair and grief. There are many infants…
Exploring the impact of healthcare workers communication with women who have experienced stillbirth in Malawi, Tanzania and Zambia. A grounded theory study
Communication and interaction with healthcare workers at the time of stillbirth remain in parents' long-term memories and impact on emotional and psychological well-being. Cultural attitudes and norms influence how stillbirth is acknowledged and discussed in s…
Gasping in Dying Children: Health Care Professionals' Feelings and Knowledge
Purpose: To assess the feelings and knowledge of health care professionals (HCPs) about gasping in dying patients in neonatal intensive care units (NICUs) and pediatric intensive care units (PICUs). Methods: A 9-item questionnaire addressed to 488 HCPs (physic…