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 351–375 of 560 publications
End-of-Life Care for Neonates: Assessing and Addressing Pain and Distressing Symptoms
One of the most essential components of end-of-life (EOL) care for neonates is assessing and addressing distressing symptoms. There is limited evidence to guide neonatal EOL symptom management and therefore significant variety in treatment (1-4). EOL neonatal …
Ethical Dilemmas at the Beginning and End of Life: A Needs-Based, Experience-Informed, Small-Group, Case-Based Curriculum for Pediatric Residents
Introduction: Pediatric residents are faced with ethical dilemmas in beginning- and end-of-life situations throughout their training. These situations are innately challenging, yet despite recommendations that residents receive training in ethics and end-of-li…
Ethical issues in treatment of babies born at 22 weeks of gestation
Many centres now report that more than half of babies born at 22 weeks survive and most survivors are neurocognitively intact. Still, many centres do not offer life-sustaining treatment to babies born this prematurely. Arguments for not offering active treatme…
Extending the Concept of Advance Care Planning to the Perinatal Period
Easier access to prenatal diagnostic procedures led to its widespread use as a screening measure. Hence, today it is more common for life-limiting illnesses to be diagnosed during fetal life. The concept of Advance Care Planning (ACP) provides a framework for …
Family centred neonatal palliative care in children's hospices: A qualitative study of parents' experiences
Since 1982, children's hospices in the UK have provided services where families can care for their children at the end of life (EOL) in a less medicalised environment. More recently, the services of many children's hospices have extended to newborn babies and …
Fostering Vicarious Resilience for Perinatal Palliative Care Professionals
Background: The demands on healthcare professionals caring for families grappling with a life-limiting condition in an unborn or newly born child can be overwhelming. Clinicians working in emergency/trauma, hospice, and pediatric settings are already at high r…
Grief among Neonatal Intensive Care Nurses
BACKGROUND: Nurses working in the high-stress environment of the neonatal intensive care unit (NICU) are at high risk of experiencing grief after death of a baby. DESIGN: Using a quantitative cross-sectional design, a convenience sample of nurses working in a …
Healthcare professionals' perceptions and experiences of using a cold cot following the loss of a baby: a qualitative study in maternity and neonatal units in the UK
BACKGROUND: Best practice in perinatal bereavement care suggests offering parents the opportunity to spend time with their baby. Cold cots facilitate this purpose by reducing the deterioration of the body and evidence indicates their wide availability in mater…
Hospital Practices for Parents Following Perinatal Loss
The aim of this study is to provide comprehensive and current information on hospital practices following perinatal death. The provinces with the highest number of hospitals in Turkey were selected for the study. To collect data, the questionnaire form of Cana…
Implementation of a Perinatal Hospice Program
BACKGROUND: In 2017, the Nebraska Unicameral passed legislative bill 506, which required physicians to inform patients carrying fetuses diagnosed with a life-limiting anomaly of the option to enroll in a comprehensive perinatal hospice program. The bill also r…
Initiating end-of-life decisions with parents of infants receiving neonatal intensive care
OBJECTIVE: To investigate whether parent-initiated or doctor-initiated decisions about limiting life-sustaining treatment (LST) in neonatal care has consequences for how possible courses of action are presented. METHOD: Formal conversations (n = 27) between do…
Italian Nurses' Attitudes Towards Neonatal Palliative Care: A Cross-Sectional Survey
PURPOSE: Neonatal palliative care becomes an option for critically ill neonates when death is inevitable. Assessing nurses' attitudes towards, barriers to, and facilitators of neonatal palliative care is essential to delivering effective nursing care. METHOD(S…
Judge rules that baby should be removed from ventilator and given palliative care
An eight week old baby should no longer be kept alive on a ventilator and should be given palliative care to spare him the risk of a “painful, agonising death,” a High Court judge has declared.1
There are no further treatment options for the baby, who was ref…
Moral Distress in the Neonatal Intensive Care Unit: What Is It, Why It Happens, and How We Can Address It
Moral distress is prevalent in the neonatal intensive care unit (NICU), where decisions regarding end-of-life care, periviable resuscitation, and medical futility are common. Due to its origins in the nursing literature, moral distress has primarily been repor…
Neonatal end-of-life decisions and ethical perspectives
End-of-life decisions are usually required when a neonate is at high risk of disability or death, and such decisions involve many legal and ethical challenges. This article reviewed the processes of ethical decision-making for severely ill or terminal neonates…
Neonatal End-of-Life Symptom Management
Purpose of review: Despite advances in technology and treatment options, over 15,000 neonates die each year in the United States. The majority of the deaths, with some estimates as high as 80%, are the result of a planned redirection of care or comfort measure…
Neonatal palliative care: perception differences between providers
Objective: The purpose of this study was to describe differences and identify education gaps in the perception of palliative care (PC) between neonatal care providers in a Level IV Neonatal intensive care unit. Study design: This is a descriptive survey mixed …
Nurses' Perceptions of the Palliative Care Needs of Neonates With Multiple Congenital Anomalies
This study was conducted to determine neonatal intensive care unit (NICU) nurses' opinions about the palliative care needs of neonates with multiple congenital anomalies. The study sample consisted of the 20 nurses who agreed to participate in the study and wo…
Outcomes of preterm infants born with marginal viability in a University Hospital in Thailand
AIM: Reports of the outcomes of infants born with marginal viability in developing countries are limited. This study aimed to determine the mortality rate and major disabilities of extremely preterm infants. METHODS: A retrospective cohort with a prospective p…
Palliative care in the neonatal intensive care unit
With increasing facilities for antenatal diagnosis, lowering gestation for intiation of intensive care, palliative care in the perinatal period is increasingly recognized as a specialist area. There have been standards and pathways developed in the UK that pro…
Parents' Descriptions of Neonatal Palliation as a Treatment Option Prior to Periviable Delivery
During periviable deliveries, parents are confronted with overwhelming and challenging decisions. This study aimed to qualitatively explore the language that pregnant women and important others utilize when discussing palliation, or "comfort care," as a treatm…
Perceived Infant Well-Being and Self-Reported Distress in Neonatal Nurses
BACKGROUND: Infants who are admitted to a neonatal intensive care unit (NICU) may experience significant symptom burden. Parents are often distressed by these symptoms, which can affect their long-term coping and distress. There is limited research examining n…
Perceptions of neonatal palliative care: Similarities and differences between medical and nursing staff in a level IV neonatal intensive care unit
Background: A significant number of newborns are affected by life-limiting or life-threatening conditions. Despite this prevalence, there are inconsistencies in attitudes toward, and delivery of, neonatal palliative care. Implementing neonatal palliative care …
Perinatal Counseling Following a Diagnosis of Trisomy 13 or 18: Incorporating the Facts, Parental Values, and Maintaining Choices
BACKGROUND: Families with a prenatal diagnosis of trisomy 13 or 18 are told many things, some true and some myths. They present with differing choices on how to proceed that may or may not be completely informed. PURPOSE: To provide the prenatal counselor with…
Physicians' attitudes in relation to end-of-life decisions in Neonatal Intensive Care Units: a national multicenter survey
BACKGROUND: End-of-life decisions for neonates with adverse prognosis are controversial and raise ethical and legal issues. In Greece, data on physicians' profiles, motivation, values and attitudes underlying such decisions and the correlation with their backg…