Browse Items · Pediatric Palliative Care Library

Antenatal Palliative Care Consultation: Implications For Decision-making And Perinatal Outcomes In A Single-centre Experience

BACKGROUND: Some pregnant patients with complex fetal anomalies meet with paediatric palliative care subspecialists prior to delivery, but referral to antenatal palliative care consultation (APCC) is not standard. Little is known about its role in…

Neonatal management of trisomy 18: Clinical details of 24 patients receiving intensive treatment.

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,…

Does episiotomy prevent perineal trauma and pelvic floor relaxation?

OBJECTIVE: To compare the outcomes of the current practice of liberally or routinely employing episiotomy to prevent perineal tears and pelvic floor relaxation (control group) to a policy of restricting episiotomy use to specific fetal and maternal…

Survival, short-term morbidity of extremely low gestational age infants and their predictors

BACKGROUND: Despite advances in neonatal care for extremely low gestational age (ELGA) infants, they experience high rates of mortality and morbidity. Local data on survival, predictors, and outcomes of ELGA infants is crucial in order to provide…

X-linked adrenoleukodystrophy: clinical, metabolic, genetic and pathophysiological aspects

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…

Tags: 2012, Adrenoleukodystrophy, Animals, ATP-Binding Cassette Transporters, Aubourg P, Backlog, Berger J, Biochimica Et Biophysica Acta, Brain, Fatty Acids, Female, Humans, Journal Article, Kemp S, Mutation, Phenotype, Pregnancy, Prenatal Diagnosis

Reducing Perinatal Mortality in Nepal Using Helping Babies Breathe

BACKGROUND AND OBJECTIVE: Newborns are at the highest risk of dying around the time of birth, due to intrapartum-related complications. Our study's objective was to improve adherence to the Helping Babies Breathe (HBB) neonatal resuscitation protocol…

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…

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…

Fatal fetal anomaly: Experiences of women and their partners

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…

Tags: 2023, Adaptation, Psychological, August List 2034, Dennehy R, Female, Grief, Humans, Jackson P, Male, O'Donoghue K, Palliative Care, Parents, Power-Walsh S, Pregnancy, Prenatal Diagnosis, Qualitative Research, Quality Of Health Care

Longitudinal Perinatal Palliative Care for Severe Fetal Neurologic Diagnoses

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.…

Tags: 2022, Diseases, Family psychology, Female, fetal, Humans, Humphrey LM, Infant, Newborn Palliative Care, October 2022 List, Parents, Perinatal Care, Pregnancy, Prenatal Diagnosis, Psychology, Schlegel AB, Seminars In Pediatric Neurology

Natural history of nonketotic hyperglycinemia in 65 patients

BACKGROUND: Glycine encephalopathy, also known as nonketotic hyperglycinemia (NKH), is an autosomal recessive disorder caused by a defect in the glycine cleavage system. NKH is classically associated with neonatal apnea, lethargy, hypotonia, and…

Tags: 2004, Adolescent, Age of Onset, AIM, Anticonvulsants/tu [Therapeutic Use], Apnea/et [Etiology], Apnea/th [Therapy], Applegarth D, Artificial, Backlog, Child, Corpus Callosum/ab [Abnormalities], Disease Progression, Female, Glycine/bl [Blood], Glycine/cf [Cerebrospinal Fluid], Hamosh A, Health Surveys, Hoover-Fong JE, Humans, Hydrocephalus/ep [Epidemiology], Hydrocephalus/et [Etiology], Hyperglycinemia, IM, Infant, Journal Article, Juvenile/dt [Drug Therapy], Juvenile/ep [Epidemiology], Juvenile/et [Etiology], Male, Myoclonic Epilepsy, Neurology, Newborn, Nonketotic/co [Complications], Nonketotic/ep [Epidemiology], Nonketotic/me [Metabolism], Nonketotic/mo [Mortality], Nystagmus, Pathologic/ep [Epidemiology], Pathologic/et [Etiology], Pregnancy, Pregnancy Complications/ep [Epidemiology], Preschool, Psychomotor Disorders/ep [Epidemiology], Psychomotor Disorders/et [Etiology], Questionnaires, Registries, Respiration, Retrospective Studies, Seizures/dt [Drug Therapy], Seizures/ep [Epidemiology], Seizures/et [Etiology], Sex Factors, Shah S, Survival Analysis, Toone J, Van Hove JL

Management of acute asthma in adults in the emergency department: nonventilatory management

Implementation of Pediatric Palliative Care (PPC) in a Neonatal Intensive Care Unit (NICU) in St.Gallen

Introduction: The Children's Hospital of Eastern Switzerland (OKS) is a hospital with 76 beds. A multiprofessional PPC and ethic team was established in 2007. After nine years of intensive development our PPC program reached full size (notification…

End-of-life decisions in perinatal care: A view from health-care providers in Mexico

OBJECTIVE: To examine the opinions of a perinatal health team regarding decisions related to late termination of pregnancy and severely ill newborns. MATERIALS AND METHODS: An anonymous questionnaire was administered to physicians, social workers,…

Hospital care for parents after perinatal death

OBJECTIVE: To systematically review parent experiences with hospital care after perinatal death. DATA SOURCES: An evaluation of more than 1,100 articles from 1966 to 2006 was performed to identify studies of fetal death in the second or third…

Trisomy 18 in neonates: prenatal diagnosis, clinical features, therapeutic dilemmas and outcome

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…

Extending the Concept of Advance Care Planning to the Perinatal Period

Easier access to prenatal diagnostic procedures led to its widespread use as a screening measure. Hence, today it is more common for life-limiting illnesses to be diagnosed during fetal life. The concept of Advance Care Planning (ACP) provides a…

Tags: 2020, August 2020 List, birth plan, Garten L, Klinische Pädiatrie, Krones T, life-limiting disease, Neonate, Palliative Care, Pregnancy, prenatal counselling, Strahleck T, von der Hude K

Healthcare professionals' experiences of perinatal loss: A systematic review

Healthcare professionals' psychological involvement in perinatal loss is a largely overlooked subject by healthcare systems, scientific research and prevention policies. A systematic scientific review has been carried out about emotional experiences,…

Health care access and utilization among pregnant adolescents

PURPOSE: To assess access to and use of health care by adolescents prior to their becoming pregnant. METHODS: An interviewer-administered questionnaire was completed by all pregnant adolescents (n = 65) entering the Rochester Adolescent Maternity…

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…

Endotoxin has acute and chronic effects on the cerebral circulation of fetal sheep.

We studied the impact of endotoxemia on cerebral blood flow (CBF), cerebral vascular resistance (CVR), and cerebral oxygen transport (O(2) transport) in fetal sheep. We hypothesized that endotoxemia impairs CBF regulation and O(2) transport, exposing…

Updated Perinatal Palliative Standards Emphasise Choice And Bereavement Support

Ana Todorovic's baby, Nadia, died just before birth. Ana says she received excellent care and was told when 37 weeks pregnant that Nadia was not going to survive for long.

Tags: 2017, Bereavement, Evans N, Female, Humans, Infant Newborn, Neonatal Nursing, Nursing Children and Young People, Palliative Care/ma [manpower], Palliative Care/st [standards], Perinatal Death, Practice Guidelines As Topic, Pregnancy, September 2017 List, United Kingdom

Addressing the continuum of maternal and newborn care in Ghana: implications for policy and practice

Although the past decade has brought global reductions in maternal, infant and child mortality, many low-resource settings have failed to make significant gains relative to their high-income counterparts. In Ghana, nearly 50% of under-five mortality…

The sense of coherence in early pregnancy and crisis support and posttraumatic stress after pregnancy loss: a prospective study

A. Antonovsky (1987) defined the sense of coherence (SOC) as the ability to perceive a stressor as comprehensible, manageable, and meaningful. In this prospective study of pregnant women, the authors tested the relationships between the SOC in early…

The spectrum of adult congenital heart disease in Europe: morbidity and mortality in a 5 year follow-up period. The Euro Heart Survey on adult congenital heart disease

AIMS: To describe clinical and demographic characteristics at baseline of a European cohort of adults with congenital heart disease (CHD) and to assess mortality and morbidity in a 5 year follow-up period. METHODS AND RESULTS: Data collected as part…

Age limits and transition of health care in pediatric emergency medicine

OBJECTIVE: To describe the practice reported by pediatric emergency department (PED) medical directors regarding age limits and transition of health care in their emergency departments and institutions. METHODS: A 28-question survey was sent by…

Parents' Decision-Making for their Foetus or Neonate with a Severe Congenital Heart Defect

BACKGROUND: Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or neonate face a complex and stressful decision between termination, palliative care, or surgery. Understanding how parents make this initial treatment…

The Provision Of Spiritual And Pastoral Care Following Stillbirth In Ireland: A Mixed Methods Study

Background The death of a baby is recognised as one of the most difficult bereavements with life-long impact for parents. How bereaved parents are cared for influences their grief journey. Optimal holistic care is provided when the physical,…

“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…

Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope

Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological…

Silhouette of pain

Perinatal mortality: assisting parental affirmation

The health professional's role does not cease with perinatal death, but shifts towards the prevention of postmortem psychiatric sequelae in the parents. A multidisciplinary bereavement service has found that an increased awareness of the final…

Tags: 1978, Adaptation, Backlog, Burial, Cohen L, Female, Fetal Death/psychology, Humans, Infant, Journal Article, Middleton J, Newborn, O'Donnohue N, Pregnancy, Psychological, The American Journal Of Orthopsychiatry, Zilkha S

Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis

The diagnosis of fetal alcohol spectrum disorder (FASD) is complex and guidelines are warranted. A subcommittee of the Public Health Agency of Canada's National Advisory Committee on Fetal Alcohol Spectrum Disorder reviewed, analysed and integrated…

Tags: 2005, Abnormalities, Adult, Alcohol Drinking/prevention & control, Alcoholism/diagnosis/prevention & control, Backlog, Canada/epidemiology, Canadian Medical Association Journal, Child, Chudley AE, Conry J, Cook JL, Diagnosis, Differential, Ethanol, Female, Fetal Alcohol Syndrome/diagnosis/epidemiology/prevention & control, Humans, Infant, Journal Article, LeBlanc N, Loock C, Mass Screening/standards, Medical History Taking/standards, Multiple/diagnosis, Nervous System Diseases/diagnosis, Newborn, Non-U.S. Gov't, Physical Examination/standards, Pregnancy, Pregnancy Complications/diagnosis/prevention & control, Prenatal Exposure Delayed Effects, Public Health Agency of Canada's National Advisory Committee on Fetal Alcohol Spectrum Disorder, Referral and Consultation/standards, Research Support, Risk Factors, Rosales T

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…

Advance Care Planning: Outpatient Antenatal Palliative Care Consultation

Kukora and colleagues report on their single centre study of antenatal palliative care consultation (APCC) and reveal that this practice—though applied in a limited number of cases—contributed to a greater use of postnatal palliative/comfort care…

Tags: 2017, Adult, Advance Care Planning/organization & Administration, Archives of Disease in Childhood. Fetal and Neonatal Edition, Carter BS, Female, Humans, Infant Newborn, March 2017 List, Outpatients, Palliative Care/organization & Administration, Pregnancy, Prenatal Care/organization & Administration, Referral And Consultation

Ethical dilemmas encountered by a palliative care team at a Pediatric cancer center in guatemala

Butterflies and Ribbons: Supporting Families Experiencing Perinatal Loss in Multiple Gestation

Introduction: In neonatology, multiple pregnancies are common. Unfortunately, it is not rare for one baby to die. Communication with parents in these circumstances has been demonstrated to be sub-optimal. Methods: Two educational programs were…

Parental decision-making following a prenatal diagnosis that is lethal, life-limiting, or has long term implications for the future child and family: a meta-synthesis of qualitative literature

BACKGROUND: Information on the factors influencing parents' decision-making process following a lethal, life-limiting or severely debilitating prenatal diagnosis remains deficient. A comprehensive systematic review and meta-synthesis was conducted to…

Tags: 2019, Abortion, Birth, Blakeley C, Bmc Medical Ethics, Continuation, Disorder, Johnstone E D, Life-limiting, October 2019 List, Pregnancy, Smith D M, Termination, Wittkowski A

Clinical and MRI correlates of cerebral palsy: the European Cerebral Palsy Study

CONTEXT: Magnetic resonance imaging (MRI) findings have been reported for specific clinical cerebral palsy (CP) subgroups or lesion types but not in a large population of children with all CP subtypes. Further information about the causes of CP could…

Exploring perinatal death with midwifery students' using a collaborative art project

OBJECTIVE: To explore the influence of the Amulet artwork and exhibition on midwifery students' perceptions of caring for parents experiencing perinatal death. DESIGN: A descriptive qualitative design involving face-to-face semi-structured interviews…

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