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 326–350 of 560 publications
The perinatal bereavement project: development and evaluation of supportive guidelines for families experiencing stillbirth and neonatal death in Southeast Brazil—a quasi-experimental before-and-after study
For most parents, getting pregnant means having a child. Generally, the couple outlines plans and has expectations regarding the baby. When these plans are interrupted because of a perinatal loss, it turns out to be a traumatic experience for the family. Valid…
The Role of Perinatal Palliative Care in Fetal Neurology
Many serious or life-threatening neurologic conditions are first diagnosed during the fetal period, often following a routine prenatal ultrasound or sonographic evaluation after an abnormal aneuploidy screen. Such conditions represent a worrisome or unexpected…
Trends in length of stay for Neonatal Intensive Care Unit patients who die before hospital discharge
OBJECTIVES: The objectives of this study were to establish days between birth and death for neonates over a 14-year period, determine if days between birth and death have changed over time across gestational age cohorts, and identify diagnoses which may put i…
Viability and thresholds for treatment of extremely preterm infants: survey of UK neonatal professionals
BACKGROUND: Decisions about treatments for extremely preterm infants (EPIs) born in the 'grey zone' of viability can be ethically complex. This 2020 survey aimed to determine views of UK neonatal staff about thresholds for treatment of EPIs given a recently re…
Whom are we seeking to protect? Extremely preterm babies and moral distress
Advances in perinatal care bring with them ethical challenges and difficult questions. When should we provide life-sustaining interventions, and who should decide? Particularly at the edges of viability, some clinicians may feel required to provide a level of …
A Concept Analysis of Neonatal Palliative Care in Nursing: Introducing a Dimensional Analysis
Despite the increasing need for neonatal palliative care, it is not adequately implemented in practice. This analysis aimed to clarify the dimension of the neonatal palliative care concept to increase understanding of the concept to give more insight into clin…
Assessment of Healthcare Professionals' Self-Perceived Competence in Perinatal/Neonatal Palliative Care After a 3-Day Training Course
Background: Perinatal/neonatal palliative care (PNPC) offers a plan of care for improving the quality of life of infants when the prolongation of life is no longer the goal of care. The number of PNPC programs has increased in recent years, but training for cl…
Behavioral Observation of Infants with Life-Threatening or Life-Limiting Illness
BACKGROUND: Infants in the neonatal intensive care unit experience aversive stimuli that cause pain and distress. Maintaining adequate relief from pain and distress is challenging because of infants' varying ages and stages of development and their nonverbal s…
Care of the Sick Newborn in a Cottage Hospital Level in a Developing Country
INTRODUCTION: Neonatal morbidity and mortality are high in Nigeria. The establishment of more centers that could offer adequate management of high-risk pregnancies and neonates is essential. OBJECTIVES: This study seeks to describe sick newborn care at the cot…
Caring for Dying Infants: A Systematic Review of Healthcare Providers' Perspectives of Neonatal Palliative Care
OBJECTIVES: The palliative and hospice care movement has expanded significantly in the United States since the 1960s. Neonatal end of life care, in particular, is a developing area of practice requiring healthcare providers to support terminally ill newborns a…
Characterization of Death in Infants With Neonatal Seizures
Background: Neonatal seizures are associated with death and neurological morbidity; however, little is known about how neonates with seizures die. Method(s): This was a prospective, observational cohort study of neonates with seizures treated at seven sites of…
Close to Home: Perinatal Palliative Care in a Community Hospital
BACKGROUND: Advances in prenatal testing and diagnosis have resulted in more parents learning during pregnancy that their child may die before or shortly after birth. These advances in testing and diagnosis have also resulted in more parents choosing, despite …
Complications and mortality of venovenous extracorporeal membrane oxygenation in the treatment of neonatal respiratory failure: a systematic review and meta-analysis
BACKGROUND: Extracorporeal membrane oxygenation (ECMO) has been increasingly used for severe neonatal respiratory failure refractory to conventional treatments. To systematically evaluate the complications and mortality of venovenous ECMO (VV ECMO) in the trea…
Conceptually Redefining Neonatal Palliative Care
BACKGROUND: First defined in 2002 by Catlin and Carter, neonatal palliative care (NPC) is a relatively new model of care in neonatal pediatrics, first appearing in the medical literature in the early 1980s. PURPOSE: The purpose of this article is to suggest a …
Continuous positive airway pressure (CPAP) for respiratory distress in preterm infants
BACKGROUND: Respiratory distress, particularly respiratory distress syndrome (RDS), is the single most important cause of morbidity and mortality in preterm infants. In infants with progressive respiratory insufficiency, intermittent positive pressure ventilat…
Coronavirus Disease-19 deaths among children and adolescents in an area of Northeast, Brazil: why so many?
OBJECTIVE: To describe COVID-19 deaths among children and adolescents in Sergipe, Brazil. METHODS: Ecological study of all COVID-19 reported cases and deaths occurring in children and adolescents <19 years of age in Sergipe reported by the health surveillance …
Creating evidence: Findings from a grounded theory of memory-making in neonatal bereavement care in Australia
PURPOSE: Perinatal and neonatal palliative care guidelines recommend the provision of photographs and other mementos as an element of care for parents bereaved by neonatal loss. However, little is known about parents' perceptions of such bereavement interventi…
Decision-making at the limit of viability: an overview
Babies born at the limit of viability have a high risk of morbidity and mortality. Despite great advances in science, the approach to these newborns remains challenging. Thus, this study reviewed the literature regarding the treatment of newborns at the limit …
Decisions Parents Make When Faced With Potentially Life-Limiting Fetal Diagnoses and the Importance of Perinatal Palliative Care
When parents face a potentially life-limiting fetal diagnosis in pregnancy, they then have a series of decisions to make. These include confirmatory testing, termination, and additional choices if they choose to continue the pregnancy. A perinatal palliative t…
Developing an Infrastructure for Bereavement Outreach in a Maternal-Fetal Care Center
Although bereavement programs are a common element of palliative medicine and hospice programs, few maternal-fetal care centers offer universal bereavement outreach services following perinatal loss. In this article, we describe the implementation of a bereave…
Early for Everyone: Reconceptualizing Palliative Care in the Neonatal Intensive Care Unit
Background: Palliative care (PC) in the neonatal intensive care unit (NICU) is often provided exclusively to infants expected to die. Standards of care support providing PC early after diagnosis with any condition likely to impact quality of life.Purpose: To d…
Educational Perspectives: Palliative Care Education in Neonatal-Perinatal Medicine Fellowship
The neonatal period from birth to less than or equal to 28 days is one of increased risk of death. Congenital anomalies and prematurity are 2 of the most common risk factors for death at this early age. Many of these neonates will die in an intensive care unit…
Effectiveness of psychotherapeutic interventions on psychological distress in women who have experienced perinatal loss: a systematic review protocol
Background: Perinatal loss is a traumatic and complex experience that contributes to negative maternal psychological states and adverse outcomes impacting fetal development, maternal-fetal/infant bonding, marital/partner relationships, and child cognitive, emo…
Effectiveness of utilizing the WHO safe childbirth checklist on improving essential childbirth practices and maternal and perinatal outcome: A systematic review and meta-analysis
INTRODUCTION: The World Health Organization (WHO) Safe Childbirth Checklist (SCC) is a 29-item checklist based on essential childbirth practices to help health-care workers to deliver consistently high quality maternal and perinatal care. The Checklist was int…
Emotional Responses of Neonatal Intensive Care Nurses to Neonatal Death
The study was planned as a descriptive qualitative study to determine the emotional responses of neonatal intensive care nurses to work in the neonatal unit and to neonatal deaths. The sample of the study consisted of 7 nurses who work at the neonatal intensiv…