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 401–425 of 560 publications
'Juggling amidst complexity' – Hospice staff's experience of providing palliative care for infants referred from a neonatal unit
Hospice has been pivotal to children's palliative care provision in the United Kingdom (UK) for more than 3 decades. Some hospices have recently expanded to include care of infants transferred from neonatal units as well as antenatal referrals. Despite develop…
Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care
BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing infant interac…
Neonatal end-of-life decision-making almost 20 years after the EURONIC study: A French survey
Nearly 20 years ago the EURONIC study reported that French neonatologists sometimes deemed it legitimate to terminate the lives of newborn infants when the prognosis appeared extremely poor. Parents were not always informed of these decisions. Major change has…
Neonatologists’ Attitudes About Diagnostic Whole-Genome Sequencing in the NICU
Using focus group methodology, we studied the attitudes of neonatologists regarding diagnostic rapid genome sequencing for newborns who were critically ill in a NICU. One focus group took place within the first year after whole-genome sequencing testing became…
New understandings of fathers' experiences of grief and loss following stillbirth and neonatal death: A scoping review
OBJECTIVE: To report on research conducted on men's experiences of grief and loss following stillbirth and neonatal death in high-income, Western countries. DESIGN: This review was guided by the following research questions: 1. The impact of perinatal death fo…
Nurses' roles and challenges in providing end-of-life care in neonatal intensive care units in South Korea
BACKGROUND: Neonatal Intensive Care Unit (NICU) nurses in Korea often experience challenges in providing care for dying infants and their families. However, there is limited understanding about what contributes to the challenges related to end-of-life care. PU…
Palliative and end-of-life care for infants and their families in the NICU: Building a program of research
This article is a brief report on the building of a program of research to support palliative and end-of-life care for infants and their families in the neonatal intensive care unit.
Parental decision-making following a prenatal diagnosis that is lethal, life-limiting, or has long term implications for the future child and family: a meta-synthesis of qualitative literature
BACKGROUND: Information on the factors influencing parents' decision-making process following a lethal, life-limiting or severely debilitating prenatal diagnosis remains deficient. A comprehensive systematic review and meta-synthesis was conducted to explore t…
Parents: Wish I had done, wish I had not done, and coping after child NICU/PICU death
BACKGROUND AND PURPOSE: An infant or child death is devastating for parents. This study examined parents' wishes regarding what they had or had not done and how they coped 1-13 months and 2-6 years after the infant's/child's neonatal intensive care unit (NICU)…
Perinatal hypoxic-ischaemic encephalopathy: a national survey of end-of-life decisions and palliative care
Objective To explore end-of-life (EoL) decision-making and palliative care in hypoxic-ischaemic encephalopathy (HIE) nationwide.
Methods A cross-sectional national study on moderate-to-severe HIE in newborns ≥35 weeks’ gestational age in 2015, including all 5…
Perinatal Palliative Care: A qualitative study evaluating the perspectives of pregnancy counselors
Background:A prenatal diagnosis of a life-limiting disease raises complex ethical, emotional, and medical issues. Studies suggest that 40%?85% of parents decide to continue the pregnancy if given the option of Perinatal Palliative Care. However, structured Per…
Perinatal palliative care education: An integrative review
OBJECTIVES: The aim of this review was to analyze the effectiveness of teaching healthcare professionals in perinatal palliative care, methods of evaluating the teaching, and the teaching strategies used. DESIGN: An integrative review. METHODS: A systematic se…
Physicians' standpoints on end-of-life decisions at the neonatal intensive care units in Jordan
The purpose of this cross-sectional descriptive study is to explore pediatricians' and neonatologists' attitudes and standpoints on end-of-life (EOL) decision-making in neonates. Seventy-five physicians, employed fulltime to care for newborns in 23 hospitals i…
Scoping Review of Memory Making in Bereavement Care for Parents After the Death of a Newborn
OBJECTIVE: To summarize and synthesize extant literature on memory making in bereavement care for parents who experience the death of a newborn and to identify opportunities for future research. DATA SOURCES: We conducted a systematic search of four health-rel…
Survival, short-term morbidity of extremely low gestational age infants and their predictors
BACKGROUND: Despite advances in neonatal care for extremely low gestational age (ELGA) infants, they experience high rates of mortality and morbidity. Local data on survival, predictors, and outcomes of ELGA infants is crucial in order to provide accurate ante…
The impact of ethical and legal decision-making in neonatal intensive care on psychosocial wellbeing of the health care professionals the overview of the HUNIC Project study design
The paper introduces the multidisciplinary HUNIC project, which is partly based on the EURONIC study. The objective of the HUNIC study is to assess the attitude and opinion of healthcare providers in Hungarian NICUs about end-of-life decisions, the decision-ma…
Trigger Criteria to Increase Appropriate Palliative Care Consultation in the Neonatal Intensive Care Unit
Introduction: Pediatric palliative care (PPC) seeks longitudinal relationships with patients facing life-threatening conditions. The majority of pediatric deaths occur within the first year of life, especially neonatal intensive care unit (NICU); however, the …
A post-mortem population survey on foetal-infantile end-of-life decisions: a research protocol
BACKGROUND: The death of a child before or shortly after birth is frequently preceded by an end-of-life decision (ELD). Population-based studies of incidence and characteristics of ELDs in neonates and infants are rare, and those in the foetal-infantile period…
Assessing Ethics Knowledge: Development of a Test of Ethics Knowledge in Neonatology
OBJECTIVE: To develop and validate the Test of Ethics Knowledge in Neonatology (TEK-Neo) with good internal consistency reliability, item performance, and construct validity that reliably assesses interprofessional staff and trainee knowledge of neonatal ethic…
Bereaved mothers' and fathers' perceptions of a legacy intervention for parents of infants in the NICU
BACKGROUND: Legacy-making, actions or behaviors aimed at being remembered, may be one strategy to enhance coping and improve grief outcomes for bereaved parents and siblings. While legacy interventions have been developed and tested in pediatric and adult popu…
Characteristics of a Perinatal Palliative Care Program Over 10 years
Background: Perinatal Hospice is a relatively new component of pediatric palliative care, which supports families who are expecting the birth of a child with life-threatening or life-limiting condition. Parents in this situation have unique needs and often exp…
Comparison of mothers and grandmothers physical and mental health and functioning within 6 months after child NICU/PICU death
Losing a child is devastating for parents and grandparents. Family and friends generally focus on comforting and supporting the bereaved parents, unintentionally ignoring the bereaved grandparents. Grandmothers and grandfathers often struggle with wanting to h…
Development and Implementation of a Survey to Assess Health-Care Provider's Competency, Attitudes, and Knowledge About Perinatal Palliative Care.
Perinatal palliative care is an emerging area of health care. To date, no published tools assess health-care provider's knowledge and level of comfort in providing such care. A 2-phase study was undertaken to develop and implement a survey to evaluate the self…
Evaluation of Comfort and Confidence of Neonatal Clinicians in Providing Palliative Care
BACKGROUND: Research found that low levels of professional confidence and personal comfort among neonatal clinicians regarding palliative care may indicate a lack of competence and hesitancy to offer neonatal palliative care services. PURPOSE: This study evalu…
Facilitating Milk Donation in the Context of Perinatal Palliative Care
The option to donate milk within the context of perinatal palliative care allows pregnant women to be involved in medical decision making before birth. In this article we examine how a perinatal bereavement program engages women and families in the process of …