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 76–100 of 560 publications
End of life care in paediatric settings: UK national survey
Objectives: To describe end of life care in settings where, in the UK, most children die; to explore commonalities and differences within and between settings; and to test whether there are distinct, alternative models of end of life care.
Methods: An online …
Establishing a Neonatal Palliative Care Program in a Tertiary Level Neonatal Intensive Care Unit
Objectives
To describe the planning and implementation of the neonatal palliative care (NPC) program in the neonatal intensive care unit (NICU) in a major referral hospital in western India.
Methods
The authors describe the neonatal characteristics, component…
Ethical Challenges in Neonatal Life Support
Advancements in neonatal intensive care have dramatically improved survival of extremely preterm and critically ill newborns while
simultaneously intensifying ethical dilemmas surrounding futility, parental authority, best interests of the child, and resource …
Ethics and end-of-life in pediatric and neonatal ICUs: a systematic review of recommendations
Background: Working in neonatal intensive care units (NICUs) or pediatric intensive care units (PICUs) entails making difficult decisions about children at the end of their lives that raise significant ethical issues. This review identified the ethical content…
Experiences and challenges in perinatal palliative care: a qualitative study among parents and healthcare providers in regional and tertiary hospitals
Background: Perinatal palliative care (PPC) is increasingly recognized as an essential component of quality maternity and neonatal care. Despite international calls for structured programs, little is known about how PPC is provided in everyday healthcare syste…
Exploring the experiences of neonatal parents for neonatal palliative care: a meta-synthesis of qualitative research
Background: Neonatal palliative care (NPC) represents a deeply emotional and ethically complex experience for families confronting the anticipated or actual loss of an infant. Although the clinical dimensions of NPC are increasingly acknowledged, there remains…
From compassion to action: perinatal palliative care at the Bonifratres Medical Centre (2014-2023) - part one
Objectives: In recent years, advances in prenatal diagnostics have enabled the identification of congenital abnormalities, including genetically determined disorders, at an early stage of fetal development. Diagnosing a lethal fetal anomaly affects the entire …
Futile therapy protocols: A 3-year review of the implementation of Polish guidelines on ineffective organ function maintenance in pediatric intensive care unit—A pilot study
Background and objectives: This study aimed to evaluate the implementation and impact of futile therapy (FT) protocols in pediatric intensive care units (PICUs) in Poland.
Methods: A retrospective analysis 48 futile therapy protocols signed at three academic …
"Holding Families in Uncertainty" : A Framework Analysis of the Role and Impact of Children's Hospices in the Provision of Perinatal Palliative Care
There is growing international evidence of the benefits of early perinatal palliative care for babies and their families. Despite this, inconsistency remains in ways care is provided by services including fetal medicine, maternity and neonatal services, and ch…
Holistic Nursing Care for Perinatal Loss Based on Swanson's Theory of Caring
Abstract
Purpose: The purpose of this study was to inform perinatal loss care by expanding upon the five processes of Swanson's Theory of Caring through a holistic lens.
Study design and methods: This study was a qualitative content analysis of 34 interview t…
Hope pluralism in antenatal palliative care
When parents face the distressing news during pregnancy that their baby is affected by a serious medical condition that will likely lead to the baby’s death before or soon after birth, they experience a range of complex emotions. Perhaps paradoxically, one com…
Hospital-Based Perinatal Bereavement and Palliative Care: A Descriptive Study to Measure Patient Satisfaction and Care Provided
Objective: The purpose of this study was to examine: 1) patient satisfaction with perinatal bereavement and palliative care services; and 2) occurrence of expected care activities provided by nurses for women who have experienced perinatal loss.
Background: P…
Impact of abortion bans on pregnancies with severe life-limiting foetal anomalies in the United States: A cost-effectiveness analysis
Objective: Since the US Supreme Court decision in Dobbs v. Jackson Women’s Health to overturn the constitutional right to abortion in June 2022, 24 states have enacted laws prohibiting termination of pregnancy before most foetal anomalies are diagnosed. Few pr…
Impact of Palliative Care on Psychosocial and Spiritual Outcomes in the Neonatal Intensive Care Unit
Context: Pediatric palliative care (PPC) consultation for infants with life-limiting conditions provides parents and caregivers with opportunities to participate in advance care planning, shared decision-making, and to receive appropriate psychosocial and spir…
Impact of Pediatric Palliative Care on Goal Concordant Care in the Neonatal Intensive Care Unit
Context Little is known about the prevalence of goal-concordant care (GCC) in the NICU and whether it can be measured from chart data. Objectives To determine if GCC can be evaluated using chart data, to identify factors associated with GCC, and to evaluate th…
Improving Communication Competencies in Neonatology: A Multimodal Simulation-Based Palliative Care Workshop
Background
Effective communication between providers and parents is fundamental in critical care provision. Particularly when discussing goals of care and delivering bad news, which is often complicated by differing values and beliefs. Many trainees lack forma…
Improving Perinatal Palliative Care in the Communities: A Regional Population-Based Study
Objectives: Perinatal palliative care, defined as support for creating birth plans that include treatment and care decisions, is crucial for families facing life-threatening fetal conditions. However, the variability in medical resources across communities nec…
Injustice and inequality in the provision of perinatal palliative care
Perinatal palliative care (PnPC) is a relatively new branch of pediatric palliative care (PPC), which focuses on providing holistic care in the antenatal, delivery, and neonatal settings. In this paper, we address previously unexplored justice-based ethical qu…
Interpersonal relationships after prenatal diagnosis of congenital heart disease: Social stressors and supports
Objective: To identify social stressors and supports for expectant parents after prenatal diagnosis of congenital heart disease (CHD) and inform interventions to reduce distress.
Method: Parents of children diagnosed prenatally with CHD (N = 37) were purposiv…
Key factors in parental end-of-life decision making for surgical necrotizing enterocolitis: A Delphi study
Background/objectives: In severe cases of necrotizing enterocolitis (NEC) in preterm neonates, surgery may be the only option for survival. However, the consequences of active treatment are not always in the infant's best interest, urging parents and physician…
Living with Loss: study protocol for a randomized controlled trial evaluating an internet-based perinatal bereavement program for parents following stillbirth and neonatal death
Background: Stillbirth and neonatal death are devastating pregnancy outcomes with long-lasting psychosocial consequences for parents and families, and wide-ranging economic impacts on health systems and society. It is essential that parents and families have a…
Looking beyond diagnoses to functioning: using the F words and personalizing care in neonatology
Extreme prematurity is associated with significant risk of mortality and morbidities. Neonatal follow-up assesses health outcomes of babies as they grow older to improve care and contribute to research and quality improvement initiatives. Recent investigations…
Managing moral distress and complex ethical challenges in the NICU
Background: In neonatology, end-of-life and complex ethical issues are frequent. This may lead to experiences of moral distress (MoD) for members of the clinical team. Here, we identify the causes, contributing factors, and contexts of MoD in the neonatal inte…
Managing the Uncertainty of "Precision" While Navigating Goals of Care: A Framework for Collaborative Interpretation of Complex Genomic Testing Results in Critically-Ill Neonates
Each year, many neonates are born with genetic diagnoses that carry a range of prognoses. As the types and availability of genetic testing have expanded, neonatal intensive care units (NICUs) have served as "launching points" for their clinical application. Br…
Maternal fetal medicine, obstetric, and neonatology perspectives on joint prenatal counseling at periviable gestational ages
Objective: To explore perspectives of maternal fetal medicine specialists (MFMs), obstetricians (OBs), and neonatologists (Neos) about antenatal counseling at periviable gestational ages and examine how those perceptions impact multidisciplinary counseling.
S…