Browse Items · Pediatric Palliative Care Library

Perinatal Palliative Care in the Neonatal Intensive Care Unit

With the frequency of infant deaths in the United States, many attributed to congenital malformations and prematurity, the neonatal intensive care unit (NICU) nurse must be adept at planning and providing perinatal palliative care. The NICU nurse…

Tags: 2022, April 2022 List, Child, Critical Care Nursing Clinics Of North America, Female, Hospice And Palliative Care Nursing, Humans, Infant, Infant Newborn, Infant Newborn Diseases, Intensive Care Units Neonatal, Maher-Griffiths C, Memory Making, Neonatal Palliative Care, Palliative Care, Perinatal Care, Perinatal Palliative Care, Pregnancy, Resilience

Palliative Care and Population Management: Utilization of Palliative Care in Pediatric Critical Care Nursing

Historically, the goal of care in a pediatric or neonatal intensive care unit was to do everything medically possible to cure illness or prolong life. When curative therapies were no longer appropriate, the approach was to turn to end-of-life care.…

Tags: 2022, April 2022 List, Child, Critical Care Nursing, Critical Care Nursing Clinics Of North America, Family-centered Care, Hospice And Palliative Care Nursing, Humans, Infant Newborn, Palliative Care/methods, Pediatric End-of-life Care, Pediatric Palliative Care, Quality Of Life, Terminal Care, Williams LJ

Prospective, phenotype-driven selection of critically ill neonates for rapid exome sequencing is associated with high diagnostic yield

PURPOSE: To investigate the impact of rapid-turnaround exome sequencing in critically ill neonates using phenotype-based subject selection criteria. METHODS: Intensive care unit babies aged

Perinatal Counseling Following a Diagnosis of Trisomy 13 or 18: Incorporating the Facts, Parental Values, and Maintaining Choices

BACKGROUND: Families with a prenatal diagnosis of trisomy 13 or 18 are told many things, some true and some myths. They present with differing choices on how to proceed that may or may not be completely informed. PURPOSE: To provide the prenatal…

Tags: 2020, Acharya K, Advances in Neonatal Care, Counseling/ethics/methods, Female, Humans, Infant Newborn, Leuthner SR, May 2021 List, Palliative Care/ethics/methods/psychology, Parents/psychology, Pregnancy, Prenatal Diagnosis/methods/psychology, Psychosocial Support Systems, shared decision making, Trisomy 13 Syndrome/diagnosis/psychology/therapy, Trisomy 18 Syndrome/diagnosis/psychology/therapy

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)…

Tags: 2020, April 2021 List, Bao L, BMC Pulmonary Medicine, Extracorporeal Membrane Oxygenation, Extracorporeal Membrane Oxygenation/adverse effects/mortality, Humans, Hypertension/etiology, Infant Newborn, Meta-Analysis, Neonate, Observational Studies as Topic, Pneumothorax/etiology, Respiratory Distress Syndrome Newborn/mortality/therapy, respiratory failure, Survival Rate, Systematic reviews, Xiong J, Zhang L

Insights into the perception that research ethics committees are a barrier to research with seriously ill children: A study of committee minutes and correspondence with researchers studying seriously ill children

BACKGROUND: Research ethics committees are commonly perceived as a 'barrier' to research involving seriously ill children. Researchers studying seriously ill children often feel that committees view their applications more harshly compared to…

Parent engagement in perinatal mortality reviews: an online survey of clinicians from six high-income countries

OBJECTIVE: Parent engagement in perinatal mortality review meetings following stillbirth may benefit parents and improve patient safety. We investigated perinatal mortality review meeting practices, including the extent of parent engagement, based on…

Prediction of Acquired Morbidity Using Illness Severity Indices in Pediatric Intensive Care Patients

OBJECTIVES: To assess the ability of two illness severity scores, Pediatric Logistic Organ Dysfunction Score 2 and Pediatric Index of Mortality 3, in predicting PICU-acquired morbidity. DESIGN: Retrospective chart review conducted from April 2015 to…

Caring for Critically Ill Children With Suspected or Proven Coronavirus Disease 2019 Infection: Recommendations by the Scientific Sections' Collaborative of the European Society of Pediatric and Neonatal Intensive Care

OBJECTIVES: In children, coronavirus disease 2019 is usually mild but can develop severe hypoxemic failure or a severe multisystem inflammatory syndrome, the latter considered to be a postinfectious syndrome, with cardiac involvement alone or…

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…

Tags: 2020, Forman KR, Humans, Infant Newborn, Infant Newborn Diseases/therapy, Internship And Residency, March 2021 List, Neonatology/education, Neoreviews, Palliative Care/methods/standards, Palliative Medicine/education, Perinatology/education, Thompson-Branch A

Moral Distress of Clinicians in Canadian Pediatric and Neonatal ICUs

OBJECTIVE: To quantify moral distress in neonatal ICU and PICU clinicians and to identify associated factors. DESIGN: A national cross-sectional survey of clinicians working in an neonatal ICU or PICU. Moral distress was assessed with the Moral…

A Tertiary Care-based Complex Care Program: Improving Care for Children With Medical Complexity

OBJECTIVE: Children with medical complexity (CMC) have significant health care costs, but they also experience substantial unmet health care needs, hospitalizations, and medical errors. Their parents often report psychosocial stressors and poor care…

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…

Adverse Events During Intrahospital Transport of Critically Ill Children: A Systematic Review

Intrahospital transport of a critically ill patient is often required to achieve a diagnostic and/or therapeutic objective. However, clinicians who recommend a procedure that requires transport are often not fully aware of the risks of transport.…

Tags: 2020, Adolescent, Anesthesia & Analgesia, Baetzel A, Child, Child Preschool, Christensen R, Critical Care/methods, Critical Illness/therapy, Elliott A, Haydar B, Humans, Infant, Infant Newborn, January 2021 List, Kamal A, MacEachern M, Pediatrics, Transportation of Patients

Efficacy and tolerance of gastrostomy feeding in pediatric forms of neuromuscular diseases

BACKGROUND: Percutaneous endoscopic gastrostomy (PEG) is a simple and reliable method, but there are few data about its use in pediatric forms of neuromuscular diseases (NMD). The aim of this study was to evaluate the nutritional effects and…

Naltrexone therapy of apnea in children with elevated cerebrospinal fluid beta-endorphin

Previous studies have indicated increased immunoreactivity of the endogenous opioid peptide beta-endorphin in the cerebrospinal fluid (CSF) of infants under 2 years of age with apnea. To assess the role of endogenous opioids in the pathogenesis of…

Sleep in individuals with Cri du Chat syndrome: a comparative study

BACKGROUND: Sleep problems are common in individuals with intellectual disability. Little is known about sleep in children and adults with Cri du Chat syndrome (CDC).;METHOD: Sleep was investigated in 30 individuals with CDC using a sleep…

Dystonia and dyskinesia in glutaric aciduria type I: clinical heterogeneity and therapeutic considerations

Glutaric aciduria type I (GA-I) is an inborn error in the degradation of lysine, hydroxylysine, and tryptophan due to a deficiency of glutaryl-CoA dehydrogenase. Glutaric, 3-OH-glutaric, and glutaconic acids are excreted in the urine, particularly…

Tags: 1994, Adolescent, Amino Acid Metabolism Inborn Errors/genetics/physiopathology/therapy, Brain/pathology/physiopathology, Carlsson G, characteristics, Child, Child Preschool, Combined Modality Therapy, Disability Evaluation, Dysarthria/genetics/physiopathology/therapy, Dystonia/genetics/physiopathology/therapy, dystonic-dyskinesia disorder, Female, Fossen A, Glutarates/urine, Glutaric acidemia type I, Glutaryl-CoA Dehydrogenase, Holme I, Humans, hyperkinetic disorder, Infant, Infant Newborn, Intellectual Disability/genetics/physiopathology/therapy, Jellum E, Kyllerman M, Lundberg M, Male, Movement Disorders, Movement Disorders/genetics/physiopathology/therapy, Neurologic Examination, Neuropsychological Tests, Oxidoreductases Acting on CH-CH Group Donors, Oxidoreductases/deficiency, Skjeldal O H, Tomography X-Ray Computed, tone and motor problems, Trajectory, von Dobeln U

Sleep disturbance in Sanfilippo syndrome: a parental questionnaire study

AIMS: To determine the incidence, manifestations, and best management of sleep disturbance in Sanfilippo syndrome (mucopolysaccharidosis (MPS) type III). METHODS: Families were ascertained through the MPS societies of Australasia, the UK, and the…

Determinants of sleep disturbances in Rett syndrome: Novel findings in relation to genotype

Rett syndrome is a rare but severe neurological disorder associated with a mutation in the methyl CpG binding protein 2 (MECP2) gene. Sleep problems and epilepsy are two of many comorbidities associated with this disorder. This study investigated the…

Who are the children using hospice care?

PURPOSE: The purpose was to examine the characteristics of children who use hospice care. DESIGN AND METHODS: Using the Andersen Model of Health Services Use, California Medicaid administrative databases were analyzed to describe the characteristics…

Associated Factors of Psychological Distress among Japanese NICU Nurses in Supporting Bereaved Families Who Have Lost Children

PURPOSE: This study aimed (1) to examine the current status of psychological distress experienced by neonatal intensive care unit (NICU) nurses in supporting bereaved families, (2) to identify the factors associated with psychological distress, and…

Parents of children diagnosed with cancer: work situation and sick leave, a five-year post end-of-treatment or a child's death follow-up study

BACKGROUND: Cancer in a child is associated with a significant impact on parental employment. We assessed the proportions of parents of survivors and bereaved parents working and reporting sick leave five years after end of successful treatment…

Sick leave among parents of children with cancer - a national cohort study

BACKGROUND: Due to psychological distress and an increased care burden, parents of children diagnosed with cancer may face a higher risk of sickness absence from work. The objective of this study was to examine the association of childhood cancer…