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 451–475 of 560 publications
Worth a Try? Describing the Experiences of Families during the Course of Care in the Neonatal Intensive Care Unit When the Prognosis is Poor
OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible neonates at…
A demanding act of love: Barriers and challenges in communication and decision-making for infants at the limits of viability
Introduction: The birth of an extreme preterm infant often comes unexpectedly. Decisions, then, must often be made quickly and under circumstances that can be emotionally stressful for parents or morally burdensome for health care professionals. In the past de…
Advance care planning: outpatient antenatal palliative care consultation
Kukora and colleagues report on their single centre study of antenatal palliative care consultation (APCC) and reveal that this practice—though applied in a limited number of cases—contributed to a greater use of postnatal palliative/comfort care regimens. Add…
Analysis of death and palliative care in a neonatal intensive care unit
Objective: To characterize cases of children admitted to the Neonatal Intensive Care Unit of a tertiary university hospital who died in the period ranging from January 01, 2012 to July 31, 2014, and who required palliative care and/or were subjected to it. Met…
Antenatal palliative care consultation: implications for decision-making and perinatal outcomes in a single-centre experience
BACKGROUND: Some pregnant patients with complex fetal anomalies meet with paediatric palliative care subspecialists prior to delivery, but referral to antenatal palliative care consultation (APCC) is not standard. Little is known about its role in perinatal de…
A qualitative study of nurse observations of symptoms in infants at end-of-life in the neonatal intensive care unit
OBJECTIVES: Assessment and management of symptoms exhibited by infants can be challenging, especially at the end-of-life, because of immature physiology, non-verbal status, and limited symptoms assessment tools for staff nurses to utilize. This study explored …
Barriers of palliative care in neonatal intensive care units: Attitude of neonatal nurses in southeast Iran
Objective: Neonatal nurses face numerous barriers in providing end-of-life (EOL) care for neonates and their families. Addressing neonatal nurses’ attitudes could provide insight into barriers that impede neonatal palliative care (NPC). This study thus conduct…
Building confidence in neonatal bereavement: The use of simulation as an innovative educational approach
Neonatal death is an unfortunate, yet recurrent incidence. Care of the dying infant is recognised as a care event that both paediatric nurses and midwives will encounter during their professional life. Thus students should be exposed to such subject matter dur…
Changes in perinatal hospital deaths occurring outside the neonatal intensive care unit over a decade
AIM: Perinatal deaths occurring outside the neonatal intensive care unit (NICU) are rarely recorded in outcome studies, despite having a direct impact on perinatal statistics. Our aim was to investigate the timing and modes of perinatal deaths that occurred ou…
Children's End-of-Life Health Care Use and Cost
BACKGROUND AND OBJECTIVES: Heath care use and cost for children at the end of life is not well documented across the multiple sectors where children receive care. The study objective was to examine demographics, location, cause of death, and health care use an…
Congenital malformations, palliative care and postnatal redirection to more intensive treatment - a review at a Swiss tertiary center
PURPOSE: The so-called lethal malformations pose ethical challenges. Most affected fetuses die before or at birth. Live-born neonates commonly receive palliative care. If the postnatal course is better than expected, redirection towards more treatment may occu…
Ethical Considerations in Perinatal Palliative Care
Clinicians may face new ethical considerations when parents continue pregnancies after receiving life-limiting fetal diagnoses and desire palliative care. In this article we present four ethical considerations in perinatal palliative care: ambiguous terminolog…
Influence of exposure to perinatal risk factors and parental mental health related hospital admission on adolescent deliberate self-harm risk
Adolescent deliberate self-harm (DSH) has been found to be associated with a range of bio-psycho-social factors. Simultaneous investigations of these factors enable more robust estimation of the independent effect of a specific risk factor by adjusting for a m…
Moral distress in PICU and neonatal ICU practitioners: A cross-sectional evaluation
Objectives: To measure the level of moral distress in PICU and neonatal ICU health practitioners, and to describe the relationship of moral distress with demographic factors, burnout, and uncertainty. Design: Cross-sectional survey. Setting: A large pediatric …
Moving toward a shared process: The impact of parent experiences on perinatal palliative care
Perinatal palliative care programs seek to support parents expecting a baby diagnosed with a serious medical condition. Clinicians have increasingly recognized the importance of parental perspectives on the medical care mothers and their fetuses and live-born …
Multiple Perspectives of Symptoms and Suffering at End of Life in the NICU
BACKGROUND: Despite technological advances in the neonatal intensive care unit, not all infants survive. Limited research has focused on infants' symptoms and suffering at end of life (EOL) from multiple perspectives. PURPOSE: To compare retrospective parent r…
Neonatal palliative care
PURPOSE OF REVIEW: A significant number of newborns are affected by life-limiting or life-threatening conditions. When prolongation of survival is no longer a goal, or prognosis is uncertain, a plan of care focused on the infant's comfort is essential. The aim…
Neonatologist training in communication and palliative care
Neonatologists receive highly varied and largely inadequate training to acquire and maintain communication and palliative care skills. Neonatology fellows often need to give distressing news to families and frequently face unique communication challenges. Whil…
Newborn Care Curriculum: Palliative Care for the Newborn
Introduction: Because pediatric hospitalists have increasing responsibilities in newborn hospitalization, training in perinatal palliative care is beneficial. A 2015 needs assessment revealed 68% of surveyed pediatric hospitalists were interested in more educa…
‘No second chance’ – Junior neonatal nurses experiences of caring for an infant at the end-of-life and their family
Death of an infant is acutely stressful for parents and professionals. Little is known about junior nurses' experiences providing end-of-life care in Neonatal units (NNU). This study aimed to better understand junior nurses' experiences providing end-of-life c…
Palliative care after neonatal intensive care: Contributions of Leonetti Law and remaining challenges
The 2005 enactment of the "Patients' rights and end-of-life care" act, known as the Leonetti law, has been accompanied by practical changes in the processes of withdrawal and withholding of active life-sustaining treatments. This law has also promoted the impl…
Palliative care approaches to neonates with chronic respiratory failure
Neonates with chronic respiratory failure have uncertain prognosis and can face significant treatment burden. As the trajectory of the illness becomes more concerning, consultation with a pediatric palliative service should be considered, especially as therape…