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 101–125 of 560 publications
Meeting the emotional and behavioral health needs of bereaved NICU parents
Parents who experience the death of a child in the neonatal intensive care unit (NICU) are at high risk for adverse behavioral health outcomes. For many parents, their child may have never lived outside of the hospital and the grief and loss this subset of ber…
Midwifery manager's experiences of knowledge and skills utilization by midwife specialists in the public health sector of South Africa
Introduction: Midwife specialists are trained professionals who render low and high-risk maternity and neonatal healthcare services across the globe. A workforce shortage of trained obstetricians and neonatologists in the rural parts of South Africa led to the…
Neonatal and paediatric palliative care interdisciplinary education in India
Background: Newborns and children with chronic and life-limiting illnesses and their families benefit from family-centered interdisciplinary palliative care, PC). The value of PC for patients and their families, coupled with health inequities, especially in lo…
Nurturing compassion in neonatal end-of-life care: a qualitative exploration of palliative care nurses' roles and experiences
Background: Compassion is central to neonatal end-of-life care, ensuring comfort and dignity for neonates with life-limiting conditions and their families. However, the emotional and ethical challenges faced by neonatal palliative care nurses, particularly in …
Outcomes of delivery in patients with diagnosed life-limiting fetal condition and evaluation of perinatal palliative care program: a retrospective review of palliative care service over 7 years
Background: The parents with a diagnosis of life-limiting fetal condition should receive medical information about the nature of defect, prognosis, possibilities of care and obstetric complications and receive psychological, spiritual, legal support. In our mo…
Outcomes used to measure the clinical application of neonatal palliative and/or end-of-life care in neonatal settings: A systematic review
Objectives: Standardised reporting of outcomes in neonatal palliative and/or end-of-life care would facilitate comparison of practice and lead to more informed decisions about practice. We systematically reviewed evidence evaluating outcomes currently used to …
Parent Perceptions of Appearance in Seriously Ill Infants in the Neonatal Intensive Care Unit
Background: Parents of infants admitted to the neonatal intensive care unit (NICU) are often overwhelmed with distress. Infant appearance contributes to parent distress, but the meaning parents assign to their observations remains unclear. Objective: This stud…
Parents' lived experience of support through their neonate's end of life and grief journey: An interpretative phenomenology study
Medical and pharmacological advancements have influenced the ability to treat acutely ill neonates. However, complications of prematurity mean that death is unpreventable in some cases. The aim of this study was to explore parents' lived experiences of end of …
Pediatric palliative care in neonates: a cross-sectional study from a high-complexity hospital in Latin America. Neopalped study
Background: Pediatric palliative care (PPC) aims to alleviate suffering, improve quality of life, and facilitate decision-making for patients, families, and healthcare professionals. Specifically, PPC in neonatal patients influences their quality of life by co…
Perinatal Bereavement Photography: A Mixed-Methods Study on Posttraumatic Growth in Parents
Perinatal death is a devastating loss for parents, often exacerbated by the lack of social support. There is accumulating evidence that perinatal bereavement photography is a valuable memory-making tool to support parents experiencing perinatal loss. However, …
Perinatal palliative care in Poland: current legal status, organization, standards and guidelines
The term “perinatal hospice” as a form of targeted care for pregnant women and their families in cases of diagnosed lethal fetal anomalies first appeared in the medical literature in 1997. The terminology regarding care for families expecting the birth of a si…
Photography and perinatal loss: parents' experiences of memory-making and meaning
BACKGROUND: Existing literature acknowledges photography's potential as a supportive psychosocial intervention for parents experiencing perinatal loss. However, empirical research that centres bereaved parents' lived experiences remains limited. METHODS: To ex…
Positioning comfort measures in antenatal counselling for periviable infants
Caring for the extremely premature infant born in the grey zone of viability is the most difficult area of neonatal medicine. Little research has been done on antenatal communication between neonatologists and parents anticipating the birth of a periviable inf…
Prediction of peri-operative mortality in care of preterm children in non-cardiac surgery
Background: The aim of this study was to develop a risk calculation model for peri-operative 30-day-mortality in preterm infants in non-cardiac surgery.
Methods: Retrospective monocentric follow-up cohort-study of 27,453 pediatric anesthesias at a German univ…
Priorities for research in perinatal palliative care: an international Delphi study
Background: Perinatal palliative care (PPC) addresses the complex needs of families facing life-limiting fetal or neonatal conditions through an interdisciplinary, family-centered approach. Despite growing recognition of its importance, there is a lack of syst…
Project Baby Panther -assessment of the implementation of the rapid Whole Genome Sequencing as routine diagnostic toll for critically ill neonates and children in Austria
Background: In critically ill neonates and children, accurate and timely diagnosis is needed to enable targeted treatments, decisions on palliative care and to avoid unnecessary invasive procedures. Exome analysis has become the indispensable diagnostic gold s…
Reducing moral distress through interdisciplinary collaboration: the impact of a weekly palliative care and neonatology conference
Background: Moral distress is the experience of knowing what ethically right action to take, but being unable to act accordingly, due to external factors. It is an experience common to providers working in the neonatal intensive care unit (NICU) where care for…
Spanish adaptation of the Perinatal Grief Intensity Scale
Aims/Background: Assessing the intensity of perinatal grief is very important for identifying the more complex cases in mothers and fathers. Despite this, there are few assessment tools available. The aim of this study was to analyse the psychometric propertie…
Supporting infants with severe perinatal diagnoses, their families and healthcare providers: development of a perinatal palliative care program
Background: Perinatal palliative care (PPC) provides essential support for families and healthcare providers at the end-of-life. Despite clear global need, structured PPC programs are not widely established.
Aim: To develop a PPC program that supports familie…
Supporting Parents of Infants With Chronic Critical Illness in the Transition From NICU to Home
Infants with chronic critical illness (CCI) are increasingly surviving to neonatal intensive care unit (NICU) discharge. Following discharge, parents of infants with CCI must navigate complex decision-making, provide direct intensive care, “including managing …
"That Is What We Have Left of Her": The Significance of Transitional Objects After the Death of an Infant in a Norwegian Context
When an infant dies in a neonatal intensive care unit in Norway, healthcare professionals provide bereaved parents with objects intended to help them processing their loss. Such objects can be clothes, blankets, soft animal toys, hand- and footprints, hair, as…
The perinatal bereavement of a twin: Support from pregnancy until telling the surviving twin
This article aims to provide practical recommendations of support during the perinatal bereavement of a twin based on both clinical practice and scientific literature. This loss is experienced by the parents as a challenging moment, with a risk of developing m…
The Role of Attachment in Perinatal Loss: A Systematic Review
Perinatal loss (PL) disrupts maternal-fetal attachment (MFA) and poses significant emotional challenges for parents and their future children. The attachment style of parents prior to the loss is crucial for their adjustment to PL. This systematic review exami…
The Role of Genetic Testing in Palliative Care Decisions for Critically Ill Newborns
Abstract
Genetic testing is rapidly becoming standard practice in the care of critically ill newborns within NICUs. Numerous studies have demonstrated the utility of genetic testing, including changes in clinical care, improved diagnostic certainty, and cost s…
Trisomy 18 and the possibility of choice: The importance of Perinatal Hospice's support
Trisomy 18 is a severe aneuploidy associated with multiple malformations and a poor prognosis. The diagnosis is typically made prenatally, leading to a high rate of pregnancy terminations. The aim of this study is to demonstrate that even though the prognosis …