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 501–525 of 560 publications
Dying at lifes beginning: Experiences of parents and health professionals in Switzerland when an 'in utero ' diagnosis incompatible with life is made
OBJECTIVE: The disclosure of a diagnosis during pregnancy of a fetal malformation, which is incompatible with life, normally comes completely unexpectedly to the parents. Although a body of international literature has considered the topic, most of it comes fr…
Elective ventilation to facilitate organ donation in infants with anencephaly: Perinatal professionals' views and an ethical analysis
Aim Following the elective ventilation and referral for organ donation of an infant with anencephaly, we sought local perinatal professionals' views of this practice. Methods Anonymous online survey: demographics, ethical viewpoints and potential public/matern…
End-of-life decision-making for newborns: a 12-year experience in Hong Kong
SETTING: Neonatal end-of-life decisions could be influenced by cultural and ethnic backgrounds. These practices have been well described in the West but have not been systematically studied in an Asian population.
OBJECTIVES: To determine: (1) different modes …
End-of-life decisions for fragile neonates: navigating between opinion and evidence-based medicine
The majority of neonatal deaths occur after a decision to limit life-sustaining interventions (LSIs). Decisions on when to withhold/withdraw LSIs in fragile neonates are among the most difficult decisions in paediatric practice. Two rigorous investigations she…
Ethical Dilemmas in Postnatal Treatment of Severe Congenital Hydrocephalus
Severe congenital hydrocephalus manifests as accumulation of a large amount of excess fluid in the brain. It is a paradigmatic example of a condition in which diagnosis is relatively straightforward and long-term survival is usually associated with severe disa…
Evidence for Implementation Strategies to Provide Palliative Care in the Neonatal Intensive Care Unit
BACKGROUND: Palliative care is a holistic framework that is designed to improve quality of life by identifying and treating distressing symptoms of life-threatening or complex conditions. Neonatal palliative care (NPC) has potential benefits for parents, staff…
Experiences in palliative home care of infants with life-limiting conditions
UNLABELLED: The aim of this study was to determine the distinct issues neonates/infants with life-limiting conditions and their families face during palliative home care and to enable physicians/caregivers to carefully address their needs. Data on home-based p…
Extremely premature birth and the choice of neonatal intensive care versus palliative comfort care: an 18-year single-center experience
OBJECTIVE: Review all live births 22 0/7 through 26 6/7 weeks gestation born 1996 through 2013 at our institution to describe the decision process and immediate outcomes of palliative comfort care (PCC) versus neonatal intensive care (NICU) and whether any sig…
Factors influencing the uptake of neonatal bereavement support services - Findings from two tertiary neonatal centres in the UK
BACKGROUND: Research on perinatal bereavement services is limited. The aim of the study was to compare the uptake of bereavement support services between two tertiary neonatal units (NNU), and to investigate influencing factors. METHOD: The medical and bereave…
Family Conferences in the Neonatal ICU: Observation of Communication Dynamics and Contributions
OBJECTIVES: Clinicians in the neonatal ICU must engage in clear and compassionate communication with families. Empirical, observational studies of neonatal ICU family conferences are needed to develop counseling best practices and to train clinicians in key co…
Fifteen-minute consultation: Perinatal palliative care
Perinatal palliative medicine is an emerging subspecialty within paediatric palliative medicine, neonatal medicine, fetal medicine and obstetrics. It comprises patient-focused, non-judgemental shared decision making and aims to provide holistic multidisciplina…
"Have no regrets:" Parents' experiences and developmental tasks in pregnancy with a lethal fetal diagnosis
SIGNIFICANCE: Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological and developm…
Information and Communication Needs of Parents in Infant End-of-Life: A Qualitative Study
Background: Hospitalization of a neonate in the neonatal intensive care unit (NICU) can be a stressful event for parents. They need specific information and communication to alleviate their stress, but these parental needs are not met by NICU staff. Exploratio…
Legal and ethical issues in neonatal nursing
Neonatal nurses regularly face complex legal and ethical dilemmas. This article discusses the hypothetical case of Jack, a two-day-old infant, born at 39 weeks' gestation, and diagnosed with trisomy 13 (syndrome), a life-limiting condition and being cared for …
Lethal fetal abnormalities: how to approach perinatal palliative care?
OBJECTIVE: Some of the antenatally diagnosed fetal pathologies are unlikely to get compatible with life. Still some women choose to continue with pregnancy. Subsequently, perinatal palliative care (PPC) has become a constructive demarche in such situations. Ou…
Modelling Neonatal Care Pathways for Babies Born Preterm: An Application of Multistate Modelling
Modelling length of stay in neonatal care is vital to inform service planning and the counselling of parents. Preterm babies, at the highest risk of mortality, can have long stays in neonatal care and require high resource use. Previous work has incorporated b…
More than medication: perinatal palliative care
In this edition, Garbi et al. present a case for what they refer to as ‘Delivery Room Hospice’ by reporting an illustrative periviable 23-week-gestation infant whose mother reports angst in watching her struggle to breathe. The authors suggest a tension betwee…
Neonatal deaths: Prospective exploration of the causes and process of end-of-life decisions
Objective: To determine the causes and process of death in neonates in Canada. Design: Prospective observational study. Setting: Nineteen tertiary level neonatal units in Canada. Participants: 942 neonatal deaths (215 full-term and 727 preterm). Exposure and o…
Neonatal end of life care in a tertiary care centre in Canada: a brief report
OBJECTIVE: To describe the processes followed by a neonatal team engaging parents with respect to end of life care of babies in whom long term survival was negligible or impossible; and to describe feedback from these parents after death of their child.
METHOD…
Neonatal palliative care-Alice's journey
Background: CHAS and NHS Lothian undertook a pilot project to review how joint working could enhance neonatal palliative care services' for families and staff. This case illustrates how collaborative working can enhance families' choices and experiences for th…
Neonatal palliative care: A quality improvement project
Our Neonatal Intensive Care Unit (NICU) Bereavement Team, are adapting strategies from the RCPCH Situational Awareness For Everyone (SAFE) Programme, to develop a quality improvement program for neonates with palliative care needs. Aims * Identify and describe…
Not there yet: Pediatric palliative care in Canada 2002-2012
Objectives: As a follow-up to a study conducted in 2002, our objective was to obtain an accurate description of programs that provided specialized pediatric palliative care (PPC) in 2012 and the children who received it; explore changes in the programs and car…
Nurse Knowledge, Work Environment, and Turnover in Highly Specialized Pediatric End-of-Life Care
OBJECTIVE: To examine the relationship between nurse knowledge, work environment, and registered nurse (RN) turnover in perinatal hospice and palliative care organizations. METHODS: Using nurse intellectual capital theory, a multivariate analysis was conducted…
Opinions of paediatricians who teach neonatal resuscitation about resuscitation practices on extremely preterm infants in the delivery room
OBJECTIVE: To describe the opinions of paediatricians who teach resuscitation in Brazil regarding resuscitation practices in the delivery room (DR) of preterm infants with gestational ages of 23-26 weeks. METHODS: Cross-sectional study with an internationally …
[Palliative Care in the Delivery Room]
Palliative care in the delivery room is a multiprofessional challenge directed to the dying newborn and the parents as well as to the care-givers. Clinical experience shows that many aspects regarding this unique palliative care situation are not well known an…