Browse Items (24 total)

Physicians often disclose serious news with patients and families; however, many clinicians experience anxiety around these conversations.1 Fear of their patients' and their own emotional reactions may cause providers to avoid these conversations…

Background: Nephropathic cystinosis is an autosomal recessive disease caused by a mutation in the CTNS gene which encodes cystinosin, a lysosomal cystine transporter. The spectrum of mutations in the CTNS gene is not well defined in the North African…

Background: This article examines the legal status and level of accessibility to perinatal palliative care (PPC) in Poland, with a focus on the number of services provided and the number of parents receiving PPC services. Material(s) and Method(s):…

OBJECTIVE: This study explored the care experiences of parents whose pregnancy was diagnosed with a fatal fetal anomaly following the legalisation of termination of pregnancy in 2019 in Ireland., METHODS: A qualitative study using in-depth…

INTRODUCTION: Perinatal palliative care services are increasingly available globally, offering a range of clinical and psychological support services to families during pregnancy, in the neonatal period and following the death of a baby with a…

BACKGROUND: Perinatal palliative care (PPC) is an emerging concept in fetal medicine that offers quality of life options and anticipatory grief management for families of fetuses with complex conditions. Few PPC outcomes are detailed in peer-reviewed…

Perinatal palliative care (PnPC) focuses on enhancing family and newborn quality-of-life in the setting of a life-limiting fetal condition while simultaneously ensuring medical care delivery that is soundly in line with the family's goals and values.…

BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing…

OBJECTIVE: -Perinatal palliative care (PPC) is an option for patients who discover that their infant has a life-limiting fetal condition, which decreases the burden of the condition using a multidisciplinary approach. STUDY DESIGN: -This review…

Background Perinatal palliative care is a relatively new component of paediatric palliative care which supports families who are expecting the birth of a child with a life-limiting condition. This study seeks to understand the characteristics of the…

BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing…

With increasing facilities for antenatal diagnosis, lowering gestation for intiation of intensive care, palliative care in the perinatal period is increasingly recognized as a specialist area. There have been standards and pathways developed in the…

BACKGROUND: The majority of children with advanced heart disease in the inpatient setting die in an intensive care unit under 1 year of age following multiple interventions. While pediatric cardiology and palliative care provider attitudes have been…

Purpose of study Advances in fetal medicine have increased referrals to tertiary perinatal care centers. NRP guidelines recommend that only neonates with anencephaly and less than. 400 grams are not to be resuscitated. In 2015, Oklahoma passed a law…

Although new technologies such as array genomic hybridization to diagnosis the cause of intellectual disabilities (ID) are exciting to clinicians, the value of an etiological diagnosis to the families of affected children is largely unknown. Parents…

Prenatal diagnosis of a lethal anomaly is a monumental moment in a family's life. It requires extensive team counseling and planning about complex neonatal and obstetric medical management. The construct of palliative care with its focus on…

Management of neonates with trisomy 18 is controversial, supposedly due to the prognosis and the lack of precise clinical information concerning efficacy of treatment. To delineate the natural history of trisomy 18 managed under intensive treatment,…

The study aimed to analyse the clinical courses of aggressively treated neonates with cytogenetically confirmed trisomy 18, with special attention focused on the efficiency of prenatal diagnostics, associated malformations, therapeutic dilemmas and…

The poor prognosis of patients with trisomy 13 has long been accepted and has been ascribed to brain and heart malformations. It has been suggested, however, that the long term survival is better than was previously thought and that cardiac surgery…

X-linked adrenoleukodystrophy (X-ALD) is the most frequent peroxisomal disease. The two main clinical phenotypes of X-ALD are adrenomyeloneuropathy (AMN) and inflammatory cerebral ALD that manifests either in children or more rarely in adults. About…

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…

Trisomy 13 and 18 are life-limiting conditions for which a palliative approach is frequently recommended. The objective of this study was to examine parental goals/decisions, the length of life of their child and factors associated with survival.…
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