Browse Items · Pediatric Palliative Care Library

Beyond the healthcare system: The societal and contextual factors impacting parents' participation in decision-making for neonates with life-threatening conditions

Background Parents of neonates with life-threatening conditions and professionals, bear the burden of making complex decisions. Parents may not be fully involved in decision-making, and there is a paucity of evidence regarding the influence of social…

A protocol for neoWONDER: Neonatal whole population data linkage to improve long-term health and wellbeing of preterm and sick babies

Introduction Early-life medical and surgical interventions in babies born preterm and/or with surgical conditions influence later life health and educational outcomes. Obtaining long-term outcomes post-discharge to evaluate the impact of…

Tags: 2024, Adult, Article, attention deficit hyperactivity disorder, Aveline A, Battersby C, behavior change, breast feeding, breast milk, Cause Of Death, Cohort Analysis, community mental health, congenital diaphragm hernia, Databases Factual, date of birth, Developmental delay, Educational Status, England, Epidemiology, esophagus atresia, factual database, Female, gastroschisis, Gestational Age, Health Care Utilization, Hirschsprung disease, hospital discharge, hospital readmission, Human, Humans, Infant Newborn, Infant Premature, information retrieval, Information Storage and Retrieval, Length Of Stay, Major Clinical Study, Male, Mortality Rate, Necrotizing Enterocolitis, Newborn, newborn assessment, Newborn Care, newborn surgery, Pediatric Intensive Care Unit, place of birth, PLoS One, premature labor, Prematurity, Propensity Score, routinely collected health data, school attendance, September List 2024, van Blankenstein E, Wales, Wellbeing

Managing CHD in Tertiary NICU in Collaboration with a Cardiothoracic Center

Increasingly non-cardiac tertiary neonatal intensive care units (NCTNs) manage newborns with CHD prior to planned transfer to specialist cardiac surgical centres (SCSC). It improves patient flow in SCSCs, enables families to be nearer home, and…

Tags: 2024, adenosine/pv [Special Situation for Pharmacovigilance], Article, Artificial Ventilation, Birth Weight, Cardiologist, Cardiomyopathy, cardioversion, Chee YH, Congenital Heart Disease, diuretic agent/dt [Drug Therapy], diuretic agent/pv [Special Situation for Pharmacovigilance], Drug Withdrawal, Dunning-Davies B, flecainide/pv [Special Situation for Pharmacovigilance], Gestational Age, heart arrhythmia, heart failure/dt [Drug Therapy], heart tumor, Human, isoprenaline/pv [Special Situation for Pharmacovigilance], Kelsall W, Low Birth Weight, Male, Neonatal Intensive Care Unit, Newborn, Observational Study, Oxygen Therapy, Pediatric Cardiology, Pregnancy, Prematurity, propranolol/pv [Special Situation for Pharmacovigilance], prostaglandin E2/pv [Special Situation for Pharmacovigilance], Psychological Well-being, Retrospective Study, September List 2024, Singh Y, supraventricular tachycardia, tertiary care center, Yates R

End-of-Life Care for Newborn Infants: A Multicenter Real-Life Prospective Study

Introduction: Most neonatal deaths in industrialized countries follow a process of redirection of care. The objectives of this study were to describe how neonates die in a middle-income country, whether there was redirection of care, and the reason…

Scandinavian perspectives on life support at the border of viability

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…

Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study

Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities can turn what was hoped to be a very exciting moment in a family's life into one of despair and grief. There are…

More qualitative research is needed to unpack the complexities of resuscitation decisions for preterm infants

We read with interest Sriraman et al's (2023)1 response to our article ‘Resuscitation thresholds were seen as guidance by Belgian neonatologists and other relevant factors were included in decision-making’.2 We appreciate that other institutions use…

Tags: 2023, Acta Paediatrica, International Journal of Paediatrics, Cavolo A, Gastmans C, Gestational Age, Human, Infant, Infant Premature, Letter, Medical Decision Making, November List 2037, Palliative Therapy, pediatric patient, Practice Guideline, Prematurity, Qualitative Research, Resuscitation

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…

"We Absolutely Had the Impression That It Was Our Decision"-A Qualitative Study with Parents of Critically Ill Infants Who Participated in End-of-Life Decision Making

BACKGROUND: Guidelines recommend shared decision making (SDM) between neonatologists and parents when a decision has to be made about the continuation of life-sustaining treatment (LST). In a previous study, we found that neonatologists and parents…

Tags: 2022, Beyer M F, Children (Basel), Critical Illness, de Vos M, Decision Making, Flemmer AW, Führer M, Infant, Kuehlmeyer K, Mang P, March List 2023, Marckmann G, Parental Involvement, Prematurity, Schouten ES, shared decision making (MeSH), Withdrawing Treatment, withholding treatment (MeSH)

Personalized support of parents of extremely preterm infants before, during and after birth

The emotional turmoil associated with extremely preterm birth is inescapable parents. How each parent handles the unexpected, makes sense of the unknown and learns to parent their child is uniquely personal. A rigid standardized approach to support…

Tags: 2022, April 2022 List, Communication, Family Integrated Care, Haward MF, Janvier A, Luu TM, Parent, Pearce R, Peer-peer support, Personalization, Prematurity, Seminars in Fetal and Neonatal Medicine

Digital decision aid for prenatal counseling in imminent extreme premature labor: development and pilot testing

BACKGROUND: In case of extreme premature delivery at 24 weeks of gestation, both early intensive care and palliative comfort care for the neonate are considered treatment options. Prenatal counseling, preferably using shared decision making, is…

Tags: 2022, Bekker MN, BMC medical informatics and decision making, digital health, Geurtzen R, Hogeveen M, IPDAS, Lutke Holzik M, March 2022 List, Neonatology, obstetrics, Patient decision aid, Prematurity, shared decision making, van den Heuvel JFM, van Heijst AFJ

Whom are we seeking to protect? Extremely preterm babies and moral distress

Advances in perinatal care bring with them ethical challenges and difficult questions. When should we provide life-sustaining interventions, and who should decide? Particularly at the edges of viability, some clinicians may feel required to provide a…

Tags: 2021, Davis PG, Decision-making, End-of-life Care, ethical confrontation, February 2022 List, Gillam L, Janvier A, Moral Distress, neonatal intensive care, Prematurity, Prentice TM, Seminars in Perinatology

Decision-making at the limit of viability: The Austrian neonatal choice context

Background: We aimed to explore the shared decision-making context at the limit of viability (weeks 22-25 of gestation) through analyzing neonatologist's communication strategies with parents and their possible impact on survival and…

A demanding act of love: Barriers and challenges in communication and decision-making for infants at the limits of viability

Introduction: The birth of an extreme preterm infant often comes unexpectedly. Decisions, then, must often be made quickly and under circumstances that can be emotionally stressful for parents or morally burdensome for health care professionals. In…

Tags: 2017, Abraham A, Child, conference abstract, Decision Making, Delivery Room, Empathy, Hendriks M J, Honesty, Human, Infant, June 2019 List, Parental Attitude, Patient Care, Prematurity, responsibility, Semi Structured Interview, Swiss Medical Weekly, University Hospital

Access to Pediatric Palliative Care in the Neonatal Intensive Care Unit by Minorities and Rural-Dwellers in the Deep South: Patterns of Care from 2009-2017 (S816)

Objectives: 1. Describe patterns of pediatric palliative care and care disparities in neonatal intensive care unit (NICU) patients and families hospitalized in the Deep South (Alabama, Louisiana, and Mississippi). 2. Describe implications for…

Decision-making at the limit of viability: Differing perceptions and opinions between neonatal physicians and nurses

Background: In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits…

End-of-life decisions and practices for very preterm infants in the Wallonia-Brussels Federation of Belgium

Background: Very preterm birth (24 to < 32 week's gestation) is a major public health issue due to its prevalence, the clinical and ethical questions it raises and the associated costs. It raises two major clinical and ethical dilemma: (i) during the…

Worth a Try? Describing the Experiences of Families during the Course of Care in the Neonatal Intensive Care Unit When the Prognosis is Poor

OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible…

Palliative care in neonatology: French neonatologists' practice

Background. - Though ethical dilemma is common in neonatal practice, it is only recently subject to scientific research. Objectives. - We aimed to describe neonatologists' practices in end of life decision-making processes and in palliative care, and…

Tags: 2017, Alluin R, cohort, Ethics, March 2018 List, Martini P, Medecine Palliative, neonatal-period, Neonatology, Palliative Care, Prematurity, Vieux R

Browse Items (23 total)