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JOURNAL ARTICLE
Fatma Uslu-Sahan, Fusun Terzioglu, Evrim A Dizdar, Neslihan Kayademir, Derya K Mutlu, Garibe Adıguzel, Gönül Tozlu, Tugce Baykal
This study aimed to determined the effect of neonatal intensive care nurses' attitudes towards palliative care on death anxiety and burnout. This was an analytic cross-sectional study conducted with 215 neonatal intensive care nurses working a children's hospital with Turkey's largest NICU bed capacity. The mean Neonatal Palliative Care Attitude Scale total score was 3.04 ± 0.78, and the mean scores of the organization, resources, and clinician subscales were 3.16 ± 0.86, 2.87 ± 0.80, and 3.10 ± 0...
May 17, 2024: Omega
#2
Abdullghany Dowaikh, Atif Alsahari, Saad Khoshhal, Tarek Momenah
BACKGROUND: Trisomy 18 (also known as Edwards syndrome) is a chromosomal disorder characterized by severe developmental anomalies and cognitive deficits. Cardiac complications are a leading cause of mortality in these patients, and the role of cardiac interventions remains controversial. CASE PRESENTATION: We report a case of a full-term baby girl with trisomy 18, born via elective cesarean section. The neonate presented with pulmonary atresia and a series of other cardiac abnormalities, necessitating immediate intervention...
June 2024: Journal of Taibah University Medical Sciences
#3
REVIEW
Janicke Syltern
Advances in neonatal medicine have allowed us to rescue extremely preterm infants. However, both long-term vulnerability and the burden of treatment in the neonatal period increase with decreasing gestational age. This raises questions about the justification of life support when a baby is born at the border of viability, and has led to a so-called "grey zone", where many professionals are unsure whether provision of life support is in the child's best interest. Despite cultural, political and economic similarities, the Scandinavian countries differ in their approach to periviable infants, as seen in their respective national guidelines and practices...
2024: Frontiers in Pediatrics
#4
Shatha Salameh, Devon Guerrelli, Jacob A Miller, Manan Desai, Nicolae Moise, Can Yerebakan, Alisa Bruce, Pranava Sinha, Yves d'Udekem, Seth H Weinberg, Nikki Gillum Posnack
BACKGROUND: Nearly 1% or 1.3 million babies are born with congenital heart disease (CHD) globally each year - many of whom will require palliative or corrective heart surgery within the first few years of life. A detailed understanding of cardiac maturation can help to expand our knowledge on cardiac diseases that develop during gestation, identify age-appropriate cardiovascular drug therapies, and inform clinical care decisions related to surgical repair, myocardial preservation, or postoperative management...
April 23, 2024: bioRxiv
#5
JOURNAL ARTICLE
Igor E Konstantinov, Paul Chai, Emile Bacha, Christopher A Caldarone, Jose Pedro Da Silva, Luciana Da Fonseca Da Silva, Joseph Dearani, Lisa Hornberger, Christopher Knott-Craig, Pedro Del Nido, Muhammad Qureshi, George Sarris, Vaughn Starnes, Victor Tsang
OBJECTIVES: Symptomatic neonates and infants with Ebstein Anomaly (EA) require complex management. A group of experts was commissioned by the American Association for Thoracic Surgery to provide a framework on this topic focusing on risk stratification and management. METHODS: The EA Clinical Congenital Practice Standards Committee is a multinational and multidisciplinary group of surgeons and cardiologists with expertise in EA. A citation search in PubMed, Embase, Scopus, and Web of Science was performed using key words related to EA...
April 18, 2024: Journal of Thoracic and Cardiovascular Surgery
#6
JOURNAL ARTICLE
Katherine M Rodriguez, Jordan Vaught, Lisa Salz, Jennifer Foley, Zaineb Boulil, Heather M Van Dongen-Trimmer, Drewann Whalen, Okonkwo Oluchukwu, Kuang Chuen Liu, Jennifer Burton, Prachi Syngal, Ofelia Vargas-Shiraishi, Stephen F Kingsmore, Erica Sanford Kobayashi, Nicole G Coufal
OBJECTIVES: Analysis of the clinical utility of rapid whole-genome sequencing (rWGS) outside of the neonatal period is lacking. We describe the use of rWGS in PICU and cardiovascular ICU (CICU) patients across four institutions. DESIGN: Ambidirectional multisite cohort study. SETTING: Four tertiary children's hospitals. PATIENTS: Children 0-18 years old in the PICU or CICU who underwent rWGS analysis, from May 2016 to June 2023...
April 26, 2024: Pediatric Critical Care Medicine
#7
JOURNAL ARTICLE
Madeleine-Rose Cain, Koert de Waal
AIM: Australian neonatal mortality data are collected and shared within collaborative networks. Individual unit outcomes are benchmarked between units and presented in quarterly or yearly reports. Low mortality is commonly interpreted as optimal performance. However, current collected data do not differentiate between death due to severe illness and death following treatment limitation. This study aims to explore the physiological condition immediately before death, and the proportion of deaths attributed to treatment limitation...
April 11, 2024: Journal of Paediatrics and Child Health
#8
JOURNAL ARTICLE
Sameer Bhatia, Swasti Pal, Samarth Kulshrestha, Dhiren Gupta, Arun Soni, Renu Saxena, Sunita Bijarnia-Mahay, Ishwar Chander Verma, Ratna Dua Puri
Next generation sequencing based diagnosis has emerged as a promising tool for evaluating critically ill neonates and children. However, there is limited data on its utility in developing countries. We assessed its diagnostic rate and clinical impact on management of pediatric patients with a suspected genetic disorder requiring critical care. The study was conducted at a single tertiary hospital in Northern India. We analyzed 70 children with an illness requiring intensive care and obtained a precise molecular diagnosis in 32 of 70 probands (45...
April 11, 2024: European Journal of Human Genetics: EJHG
#9
REVIEW
Charu Venkatesan, DonnaMaria Cortezzo, Mounira Habli, Sonika Agarwal
As the field of fetal-neonatal neurology has expanded over the past 2 decades with increasingly complex diagnoses, multidisciplinary collaboration with many subspecialties including genetics, neonatology, obstetrics, maternal fetal medicine, surgical sub-specialties, cardiology, radiology, palliative care, and ethics has needed to evolve to strive to offer optimal patient care. While comprehensive care delivery with an inter-disciplinary approach is preferred, there are often barriers based on numerous health disparities especially in resource limited settings...
April 10, 2024: Seminars in Fetal & Neonatal Medicine
#10
JOURNAL ARTICLE
Somin Kim, Sunhee Lee
The increase of high-risk newborns due to societal changes has presented neonatal intensive care unit nurses with more ethical challenges and heightened their perception of neonatal palliative care. Therefore, this study was a descriptive survey exploring the perceptions of neonatal intensive care unit nurse regarding biomedical ethics and neonatal palliative care in neonatal intensive care units. The research participants were 97 neonatal intensive care unit nurses who had been directly involved with end-of-life care for high-risk babies...
April 2024: Asian Bioethics Review
#11
JOURNAL ARTICLE
(no author information available yet)
No abstract text is available yet for this article.
April 1, 2024: Advances in Neonatal Care: Official Journal of the National Association of Neonatal Nurses
#12
JOURNAL ARTICLE
Oscar Li, Royce Lee, Renee D Boss, Ming-Hsien Wang
Palliative care in the field of urology has largely been limited to adult oncologic conditions. Although there is a plethora of established literature suggesting the advantageous impact of palliative care, there is limited integration of palliative care in adult urology. This underutilization is further exacerbated in pediatric urology, and palliative care in pediatric urology remains an underexplored area despite the prevalence of several life-limiting conditions in this patient population. This paper highlights the potential need for palliative care intervention in a variety of urologic conditions in the pediatric population, including congenital lower urinary tract obstruction, neurogenic bladder dysfunction, exstrophy-epispadias complex, and congenital bilateral renal agenesis...
March 21, 2024: Journal of Pain and Symptom Management
#13
JOURNAL ARTICLE
Fouad Bitar, Issam M El-Rassi, Rana Zareef, Yehya Jassar, Jennifer Abboud, Ziad Bulbul, Fadi Bitar, Mariam Arabi
BACKGROUND: Hypoplastic left heart syndrome (HLHS) accounts for 2.6% of congenital heart disease and is an invariably fatal cardiac anomaly if left untreated. Approximately 33,750 babies are born annually with HLHS in developing countries. Unfortunately, the majority will not survive due to the scarcity of resources and the limited availability of surgical management. AIM: To describe and analyze our experience with the hybrid approach in the management of HLHS in a developing country...
2024: Frontiers in Cardiovascular Medicine
#14
JOURNAL ARTICLE
Jovana A Jucker, Vincenzo Cannizzaro, Roxanne E Kirsch, Jürg C Streuli, Eva De Clercq
BACKGROUND: Using extracorporeal membrane oxygenation (ECMO) in paediatric and neonatal intensive care units (PICU/NICU) creates ethical challenges and carries a high risk for moral distress, burn out and team conflicts. AIM: The study aimed to gain a more comprehensive understanding of the underlying factors affecting moral distress when using ECMO for infants and children by examining the attitudes of ECMO nurses. METHODS: Four focus groups discussions were conducted with 21 critical care nurses working in a Swiss University Children's Hospital...
March 21, 2024: Nursing in Critical Care
#15
JOURNAL ARTICLE
Rebecca A Bertrandt, Katja Gist, Denise Hasson, Huaiyu Zang, Garrett Reichle, Catherine Krawczeski, David Winlaw, David Bailly, Stuart Goldstein, David Selewski, Jeffrey Alten
OBJECTIVES: Cardiac surgery-associated acute kidney injury (CS-AKI) is associated with adverse outcomes. Single-center studies suggest that the prevalence of CS-AKI is high after the Norwood procedure, or stage 1 palliation (S1P), but multicenter data are lacking. DESIGN: A secondary analysis of the Neonatal and Pediatric Heart and Renal Outcomes Network (NEPHRON) multicenter cohort who underwent S1P. Using neonatal modification of Kidney Disease Improving Global Outcomes (KDIGO) criteria, perioperative associations between CS-AKI with morbidity and mortality were examined...
March 14, 2024: Pediatric Critical Care Medicine
#16
JOURNAL ARTICLE
Catherine M Groden, Mona Raed, Paul Helft, Jayme D Allen
OBJECTIVE: Describe care surrounding the end of life (EOL) in the neonatal intensive care unit (NICU). STUDY DESIGN: Retrospective chart review of 208 infants who died in a level IV referral-only NICU over 5 years. RESULTS: A goals of care (GOC) conversation was documented before the day of death for 63% of infants. 73% died following withdrawal of life-sustaining treatment (WD); 13% died in a code. The median age at death was 17.5 days. 72% were held by a parent at EOL...
March 14, 2024: Journal of Perinatology: Official Journal of the California Perinatal Association
#17
JOURNAL ARTICLE
Xiao-Xiao Lu, Yi Lu, Lin Yang, Yang-Yang Ma, Huan-Huan Wang
The patient was a male infant, born full-term, admitted to the hospital at 28 days of age due to jaundice for 20 days and abdominal distension for 15 days. The patient developed symptoms of jaundice, hepatosplenomegaly, massive ascites, and progressively worsening liver function leading to liver failure, severe coagulation disorders, and thrombocytopenia one week after birth. Various treatments were administered, including anti-infection therapy, fluid restriction, use of diuretics, use of hepatoprotective and choleretic agents, intermittent paracentesis, blood exchange, and intravenous immunoglobulin, albumin, and plasma transfusions...
February 15, 2024: Zhongguo Dang Dai Er Ke za Zhi, Chinese Journal of Contemporary Pediatrics
#18
JOURNAL ARTICLE
Zoe Ritchie, Gail Teachman, Randi Zlotnik Shaul, Maxwell J Smith
INTRODUCTION: The value of a short life characterized by disability has been hotly debated in the literature on fetal and neonatal outcomes. METHODS: We conducted a scoping review to summarize the available empirical literature on the experiences of families in the context of trisomy 13 and 18 (T13/18) with subsequent thematic analysis of the 17 included articles. FINDINGS: Themes constructed include (1) Pride as Resistance, (2) Negotiating Normalcy and (3) The Significance of Time...
March 2, 2024: BMC Medical Ethics
#19
JOURNAL ARTICLE
Gustavo Marquezani Spolador, Fernanda Bastos, Rita Tiziana Verardo Polastrini, Ivete Zoboli, Ana Cristina Henrique, Joaquim Pinheiro Vieira Filho, Mariana Ribeiro Marcondes da Silveira, Elaine Freitas, Andréa Gislene do Nascimento, Silvia Maria de Macedo Barbosa
Background: The pediatric palliative care (PPC) sets up an interdisciplinary approach of chronic complex diseases throughout birth to adolescence. It encompasses countless contrasts in development and diagnosis scopes, which make this area a challenge to nonpediatric practitioners. Objective: We sought to assess the most prevalent diseases in follow-up of the PPC team. Methods: We analyzed the medical records of PPC clinic during the years 2001 and 2021 and the diagnosis of outpatients. We established a parallel with the world scientific literature concerning the epidemiology of PPC...
February 22, 2024: Journal of Palliative Medicine
#20
JOURNAL ARTICLE
Daphna Marom, Adi Mory, Sivan Reytan-Miron, Yam Amir, Alina Kurolap, Julia Grinshpun Cohen, Yocheved Morhi, Tatiana Smolkin, Lior Cohen, Shmuel Zangen, Adel Shalata, Arieh Riskin, Amir Peleg, Karen Lavie-Nevo, Dror Mandel, Elana Chervinsky, Clari Felszer Fisch, Vered Fleisher Sheffer, Tzipora C Falik-Zaccai, Jonathan Rips, Noa Ofek Shlomai, Smadar Eventov Friedman, Calanit Hershkovich Shporen, Sagie Josefsberg Ben-Yehoshua, Aryeh Simmonds, Racheli Goldfarb Yaacobi, Sofia Bauer-Rusek, Hussam Omari, Karin Weiss, Ori Hochwald, Arie Koifman, Omer Globus, Nurit Assia Batzir, Naveh Yaron, Reeval Segel, Iris Morag, Orit Reish, Aviva Eliyahu, Leah Leibovitch, Marina Eskin Schwartz, Ramy Abramsky, Amit Hochberg, Anat Oron, Ehud Banne, Igor Portnov, Nadra Nasser Samra, Amihood Singer, Hagit Baris Feldman
IMPORTANCE: National implementation of rapid trio genome sequencing (rtGS) in a clinical acute setting is essential to ensure advanced and equitable care for ill neonates. OBJECTIVE: To evaluate the feasibility, diagnostic efficacy, and clinical utility of rtGS in neonatal intensive care units (NICUs) throughout Israel. DESIGN, SETTING, AND PARTICIPANTS: This prospective, public health care-based, multicenter cohort study was conducted from October 2021 to December 2022 with the Community Genetics Department of the Israeli Ministry of Health and all Israeli medical genetics institutes (n = 18) and NICUs (n = 25)...
February 5, 2024: JAMA Network Open
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