Browse Items (734 total)

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)…

OBJECTIVE:
Many extremely preterm neonates die in the delivery room (DR) after decisions to withhold or withdraw life-sustaining treatments or after failed resuscitation. Specific palliative care is then recommended but sparse data exist about the…

Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years. This guideline recommends that end of life care be managed as a long term process that begins at the time of…

OBJECTIVE:
Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.
INTERVENTION:
MyQuality is an online tool that enables families to choose…

Abstract
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…

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…

We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal…

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…

BACKGROUND:
In Canada and other developed countries, the majority of neonatal deaths occur in tertiary neonatal intensive care units. Most deaths occur following the withdrawal of life-sustaining treatments.
AIM:
To explore neonatal death events and…

BACKGROUND:
An order protocol for distress (OPD), including respiratory distress and acute pain crisis, has been established for pediatric palliative care patients at Sainte-Justine Hospital (SJH). After discussion with the patient/his or her family,…

OBJECTIVE:
Evaluate changes in end-of-life care following initiation of a palliative care program in a neonatal intensive care unit.
STUDY DESIGN:
Retrospective study comparing infant deaths before and after implementation of a Palliative Care…

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…

Aim: End-of-life care remains within the scope of practice of all neonatal units. There is a paucity of literature regarding the evidence-base for palliative care interventions in the perinatal or neonatal population (Balaguer).

Little is…

Most deaths in U.S. PICUs occur after a decision has been made to limitation or withdrawal of life support. The objective of this study was to describe the clinical characteristics and outcomes of children whose families discussed limitation or…

BACKGROUND:
Perinatal palliative care (PPC) programs are proliferating nationwide, but little is known about their structure, process, or desired outcomes, to inform future program development.
OBJECTIVE:
To explicate structure, processes, and…

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…

OBJECTIVE:
Many children who die are eligible for hospice enrollment but little is known about parental perceptions of the hospice experience, the benefits, and disappointments. The objective of this study was to explore parental perspectives of the…

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…

The death of a neonate is devastating for all involved. Each year, critically ill neonates present to emergency departments across the United States. These infants require acute medical interventions with a goal of stabilization. Despite these…

OBJECTIVES: To examine the relationship between pediatric primary care involvement and hospice and home health care use at end of life. METHODS: California Medicaid data were used to estimate the relationship between pediatric primary care…

Aims Patients with Trisomy 18 have a poor prognosis-only 5%-10% of children survive beyond the first year; however various clinical features of Trisomy 18 such as gastrointestinal, cardiac and central nervous system anomalies may benefit from…

The loss of a close friend or relative is always an ordeal. When this loved one is a baby, born or even unborn, a number of specific aspects have been reported by parents and researchers. The specificities of perinatal mourning have been…

We aimed to characterize the parent experience of caring for an infant with neonatal encephalopathy. In this mixed-methods study, we performed semistructured interviews with parents whose infants were enrolled in an existing longitudinal cohort study…

BACKGROUND: The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child. OBJECTIVE: (i) Describe the problems and hopes reported by…

Abstract
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…

Open and honest communication has been identified as an important factor in providing good palliative care. However, there is no easy solution to if, when, and how parents and a dying child should communicate about death. This article reports how…

Draft guidelines address regional variations, but there are worries over terminology, the needs of family members and implementation. The death of a child is a comparatively rare event in the UK. Even so, more than 3,000 infant and 2,000 children and…

Children who require palliative care are being 'short changed or ignored', according to a survey of services in England by the charity Together for Short Lives.

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