1
40
22
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
April 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.1093/pch/pxz066.129" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1093/pch/pxz066.129</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Survival, short-term morbidity of extremely low gestational age infants and their predictors
Publisher
An entity responsible for making the resource available
Paediatrics and Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Infant; sepsis; cohort analysis; controlled study; female; human; male; retrospective study; perception; palliative therapy; Pregnancy; stillbirth; gender; necrotizing enterocolitis; clinical article; gestational age; neonatal intensive care unit; prevalence; infant; conference abstract; birth weight; corticosteroid; length of stay; mortality risk; Gestational Age; brain hemorrhage; regression analysis; univariate analysis; survival prediction; encephalomalacia; morbidity; lung dysplasia; probability; retrolental fibroplasia
Creator
An entity primarily responsible for making the resource
Kis H; Lemyre B; Radonjic A; Feberova J
Description
An account of the resource
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 accurate antenatal counseling. <br/>OBJECTIVE(S): To determine the survival and morbidities of ELGA infants in our region stratified by gestational age. DESIGN/METHODS: We performed a retrospective cohort study of infants born at <26 weeks gestational age who received intensive care at two level III Neonatal Intensive Care Units between January 1st 2014 and December 31st 2017. We excluded stillbirths and infants who received only palliative care from birth. Outcomes included survival to discharge home (or transfer to another center), length of admission, and the following short-term morbidities: intraventricular hemorrhage (IVH) grade III - IV, periventricular leukomalacia (PVL), bronchopulmonary dysplasia (BPD), necrotizing enterocolitis (NEC) Bell's Stage >=2, late-onset sepsis, and retinopathy of prematurity (ROP) requiring treatment. A multivariable regression analysis was performed to analyze three factors identified as significant (p<.05) on univariate analysis. <br/>RESULT(S): 117 infants were included: 8 infants at 22 weeks, 20 at 23 weeks, 38 at 24 weeks, and 51 at 25 weeks. The rates of survival were 37.5%, 50.0%, 68.4%, and 76.5% at 22, 23, 24, and 25 weeks, respectively. The probability of survival was similar for infants born at 22 and 23 weeks GA and significantly lower than for infants born at 24 and 25 weeks (fig.1). The mean (+/-SD) length of stay in the NICU was 114.6 +/- 33.7 days. The overall prevalence of short-term morbidities was 25.9% for IVH grade III - IV, 5.4% for PVL, 89.9% for BPD, 16.1% for NEC, 40.0% for late-onset sepsis, and 19.3% for ROP requiring treatment. Only 2.7% of infants who survived >=36 weeks (post-menstrual age) had no short-term morbidities. The multivariable regression analysis demonstrated: an increased risk of mortality for every 100g decrease in birth weight (OR=1.97; 95% CI: 1.40 - 1.98; p =.02), an increased risk of mortality for an incomplete course of antenatal corticosteroids (OR=1.58; 95% CI: 1.2 - 1.78; p =.008), and no effect of gender on mortality over time (OR=1.38; 95% CI: 0.8 - 1.68; p=.15). <br/>CONCLUSION(S): ELGA infants from our region faced similarly high rates of mortality and major short-term morbidity compared to other Canadian centers. Infants born at 22 and 23 weeks experienced similar survival trajectories, which should be further explored as it may influence clinical perceptions of viability at 22 weeks. (Figure Presented).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/pch/pxz066.129" target="_blank" rel="noreferrer noopener">10.1093/pch/pxz066.129</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
April List 2024
Birth Weight
brain hemorrhage
Clinical Article
Cohort Analysis
conference abstract
Controlled Study
Corticosteroid
encephalomalacia
Feberova J
Female
Gender
Gestational Age
Human
Infant
Kis H
Lemyre B
Length Of Stay
lung dysplasia
Male
Morbidity
mortality risk
Necrotizing Enterocolitis
Neonatal Intensive Care Unit
Paediatrics And Child Health
Palliative Therapy
Perception
Pregnancy
Prevalence
Probability
Radonjic A
Regression Analysis
retrolental fibroplasia
Retrospective Study
Sepsis
Stillbirth
survival prediction
univariate analysis
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
April 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2024.113930" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpeds.2024.113930</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment
Publisher
An entity responsible for making the resource available
Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
Child; child; adult; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; chronic disease; Socioeconomic Factors; gestational age; Referral and Consultation; ethnicity; Only Child; patient referral; tertiary care center; morbidity; mortality; neurologic examination; multidisciplinary team; Hispanic; medicaid; racism; primary medical care; special situation for pharmacovigilance; racial disparity; economic inequality
Creator
An entity primarily responsible for making the resource
Jones MN; Simpson SL; Beck AF; Cortezzo DE; Thienprayoon R; Corley AMS; Thomson J
Description
An account of the resource
Objective: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial functional morbidity and mortality. Study design: We conducted a retrospective study of patients with HI-NI who received primary care services at a tertiary care center from 2014 through 2019. HI-NI diagnoses that warranted a palliative care referral were identified by consensus of a multidisciplinary team. The outcome was referral to palliative care. The primary exposure was race, categorized as Black or non-Black to represent the impact of anti-Black racism. Additional exposures included ethnicity (Hispanic/non-Hispanic) and insurance status (Medicaid/non-Medicaid). Descriptive statistics, bivariate analyses, and multivariable logistic regression models were performed to assess associations between exposures and palliative care referral. Results: A total of 801 patients with HI-NI were included; 7.5% received a palliative referral. There were no differences in gestational age, sex, or ethnicity between patients who received a referral and those who did not. In multivariable analysis, adjusting for ethnicity, sex, gestational age, and presence of complex chronic conditions, Black children (aOR 0.47, 95% CI 0.26, 0.84) and children with Medicaid insurance (aOR 0.40, 95% CI 0.23, 0.70) each had significantly lower odds of palliative referral compared with their non-Black and non-Medicaid-insured peers, respectively. Conclusions: We identified inequities in pediatric palliative care referral among children with HI-NI by race and insurance status. Future work is needed to develop interventions, with families, aimed at promoting more equitable, antiracist systems of palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpeds.2024.113930" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2024.113930</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
Adult
April List 2024
Article
Beck AF
Child
Chronic Disease
Cohort Analysis
Controlled Study
Corley AMS
Cortezzo DE
economic inequality
Ethnicity
Female
Gestational Age
Hispanic
Human
Jones MN
Journal of Pediatrics
Major Clinical Study
Male
Medicaid
Morbidity
Mortality
Multidisciplinary team
Neurologic Examination
Only Child
Patient Referral
primary medical care
racial disparity
racism
Referral And Consultation
Retrospective Study
Simpson SL
Socioeconomic Factors
special situation for pharmacovigilance
tertiary care center
Thienprayoon R
Thomson J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
February 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.3390/children10101635" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10101635</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Lactation Support as a Proxy Measure of Family-Centered Care Quality in Neonates with Life-Limiting Conditions-A Comparative Study
Publisher
An entity responsible for making the resource available
Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
article; cohort analysis; controlled study; female; hospital admission; human; major clinical study; male; retrospective study; cerebral palsy; gestational age; comparative study; hospital discharge; congenital heart disease; genetic disorder; seizure; neurologic disease; lung disease; neonatal intensive care unit; clinical assessment; mortality; infant; kidney disease; extracorporeal oxygenation; health disparity; cognitive defect; length of stay; gastrointestinal disease; do not resuscitate order; breast feeding; hypoxic ischemic encephalopathy; family centered care; sensory dysfunction; incurable disease; lactation; life limiting condition; breast pump; donor milk; learning disorder; nutritional deficiency
Creator
An entity primarily responsible for making the resource
Brito S; Williams A; Fox J; Mohammed T; Chahin N; McCarthy K; Nubayaat L; Nunlist S; Brannon M; Xu J; Hendricks-Munoz KD
Description
An account of the resource
Lactation support is an important measure of Family-Centered Care (FCC) in the Neonatal Intensive Care Unit (NICU). Life-limiting conditions (LLCs) raise complex ethical care issues for providers and parents in the NICU and represent a key and often overlooked population for whom FCC is particularly important. We investigated healthcare disparities in FCC lactation support quality in infants with LLCs. Methods: A retrospective cohort of inborn infants with or without LLCs admitted to the NICU between 2015-2023 included 395 infants with 219 LLC infants and 176 matched non-LLC infants and were compared on LLC supports. Results: The LLC cohort experienced greater skin-to-skin support, but less lactation specialist visits, breast pumps provided, and human milk oral care use. LLC infants also experienced less maternal visitation, use of donor milk (LLC: 15.5%, non-LLC: 33.5%), and breastfeeds (LLC: 24.2%, non-LLC: 43.2%), with lower mean human milk provision (LLC: 36.6%, non-LLC: 67.1%). LLC infants who survived to discharge had similar human milk use as non-LLC infants (LLC: 49.8%, non-LLC: 50.6%). Conclusion: Lactation support was significantly absent for families and infants who presented with LLCs in the NICU, suggesting that policies can be altered to increase lactation support FCC quality for this population.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3390/children10101635" target="_blank" rel="noreferrer noopener">10.3390/children10101635</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Article
Brannon M
breast feeding
breast pump
Brito S
Cerebral Palsy
Chahin N
Children
clinical assessment
Cognitive Defect
Cohort Analysis
Comparative Study
Congenital Heart Disease
Controlled Study
do not resuscitate order
Donor Milk
extracorporeal oxygenation
Family Centered Care
February List 2024
Female
Fox J
gastrointestinal disease
Genetic Disorder
Gestational Age
health disparity
Hendricks-Munoz KD
Hospital Admission
hospital discharge
Human
hypoxic ischemic encephalopathy
incurable disease
Infant
kidney disease
lactation
learning disorder
Length Of Stay
Life limiting condition
Lung Disease
Major Clinical Study
Male
McCarthy K
Mohammed T
Mortality
Neonatal Intensive Care Unit
Neurologic Disease
Nubayaat L
Nunlist S
nutritional deficiency
Retrospective Study
Seizure
sensory dysfunction
Williams A
Xu J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
November 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November List 2023
URL Address
<a href="http://doi.org/10.1111/apa.16901" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.16901</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
More qualitative research is needed to unpack the complexities of resuscitation decisions for preterm infants
Publisher
An entity responsible for making the resource available
Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Infant; human; palliative therapy; gestational age; medical decision making; practice guideline; Infant Premature; qualitative research; prematurity; pediatric patient; resuscitation; letter
Creator
An entity primarily responsible for making the resource
Cavolo A; Gastmans C
Description
An account of the resource
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 an integrative approach to resuscitation decisions for extremely premature infants, one that takes into proper account other prognostic factors as well as parents' opinion. We also find it alarming that so many neonatologists have negative attitudes towards resuscitation of infants at 22 and 23 weeks. We agree that it is acceptable to advise palliative care at these gestational ages as mortality and morbidity remain high, but parents should be involved in the decision-making and they should be allowed to opt for resuscitation. Physicians' negative attitudes might hinder true shared decision-making. In this regard, Sriraman et al indirectly identify another underlying issue related to our understanding of resuscitation decisions for premature infants. We have plenty of studies investigating physicians' attitudes towards resuscitation of these infants. However, the vast majority of empirical research on this topic is quantitative in nature.3 Quantitative studies are well suited to elicit general trends, in this case, whether on average physicians prefer to resuscitate at 22 and 23 weeks, but they are ill-suited to uncover the complexities behind such trend. In other terms, quantitative methods provide a valuable description of a certain phenomenon, but they cannot explain why things are the way they are. Applied to the context of resuscitation decisions for preterm infants, the lack of qualitative studies means that we know that physicians prefer palliative care at the lowest gestational ages, but we do not know why. On top of that, there is also little research on how physicians make resuscitation decisions in practice, meaning that we also do not know to what extent attitudes and practice correspond. As Sriraman et al pointed out we need to understand whether the fact that physicians prefer not to resuscitate at the lowest gestational ages means that they refuse all resuscitation requests. We also need to understand what factors influence these decisions. This knowledge is not only necessary to better understand this complex and ethically challenging decision-making, but it is also necessary to understand how to improve this decision-making. It can also offer important insight to draft guidelines that can better guide parents and healthcare providers through this process. Hence, we welcome the research that Sriraman's team is planning and we are looking forward to the results.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/apa.16901" target="_blank" rel="noreferrer noopener">10.1111/apa.16901</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
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
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
April 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2021 List
URL Address
<a href="http://doi.org/10.1093/pch/pxz089" target="_blank" rel="noreferrer noopener">http://doi.org/10.1093/pch/pxz089</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Experiences from the first 10 years of a perinatal palliative care program: A retrospective chart review
Publisher
An entity responsible for making the resource available
Paediatrics & Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Infant; Program Evaluation; Referral and Consultation; Terminal Care; Human; Descriptive Statistics; Perinatal Care; Prenatal Diagnosis; Retrospective Design; Record Review; Work Experiences; Gestational Age; Perinatal Death; Palliative Care -- In Infancy and Childhood; Treatment Outcomes; Neonatologists; Central Nervous System Diseases; Early Intervention; Infant High Risk
Creator
An entity primarily responsible for making the resource
Doherty ME; Power L; Williams R; Stoppels N; Grandmaison Dumond L
Description
An account of the resource
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 infants and families referred for perinatal palliative care and the context for referrals in terms of diagnoses, referral characteristics, interventions, and outcomes. Methods A retrospective chart review of infants with prenatally diagnosed life-limiting conditions that were referred for perinatal palliative care. Results Eighty-five referrals were made for perinatal palliative care during the 10-year period, of which, 84 chose to continue with the service. Average gestational age at diagnosis was 23 weeks, and the mean time between diagnosis and referral to palliative care was 7 weeks. Stillbirths were common, occurring in 29% cases. Of livebirths, 59% of the infants survived for 2 days, and 80% died within 30 days. The most commonly referred conditions were trisomy 13 or 18 (24%), severe central nervous system malformations (20%), and severe congenital cardiac disease (16%). Referrals were most often made by neonatologists (39%), and maternal–fetal medicine specialists (36%). Discussion Our study confirms previously observed characteristics of diagnosis, referrals, and outcomes, while providing the most detailed account of lifespans for particular diagnoses to date. Our findings validate the need for perinatal palliative care, as 99% of those referred continued with the service. Future research should adopt a prospective approach to identify critical factors affecting decision making of families and physicians in the wake of a life-limiting diagnosis.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/pch/pxz089" target="_blank" rel="noreferrer noopener">10.1093/pch/pxz089</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
April 2021 List
Central Nervous System Diseases
Descriptive Statistics
Doherty ME
Early Intervention
Gestational Age
Grandmaison Dumond L
Human
Infant
Infant High Risk
Neonatologists
Paediatrics & Child Health
Palliative Care -- In Infancy and Childhood
Perinatal Care
Perinatal Death
Power L
Prenatal Diagnosis
Program Evaluation
Record Review
Referral And Consultation
Retrospective Design
Stoppels N
Terminal Care
Treatment Outcomes
Williams R
Work Experiences
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
February 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2019.10.039" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpeds.2019.10.039</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Center, Gestational Age, and Race Impact End-of-Life Care Practices at Regional Neonatal Intensive Care Units
Publisher
An entity responsible for making the resource available
Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
article; Black person; cause of death; central nervous system; child; cohort analysis; controlled study; do not resuscitate order; drug withdrawal; female; gestational age; human; infant; injury; life sustaining treatment; major clinical study; male; Neonatal Intensive Care Unit; newborn; newborn death; retrospective study; terminal care
Creator
An entity primarily responsible for making the resource
Fry J T; Matoba N; Datta A; DiGeronimo R; Coghill C H; Natarajan G; Brozanski B; Leuthner S R; Niehaus J Z; Schlegel A B; Shah A; Zaniletti I; Bartman T; Murthy K; Sullivan K M; Asselin J; Durand D; Dykes F; Evans J; Padula M; Pallotto E; Grover T; Piazza A; Reber K; Short B
Description
An account of the resource
Objective: To assess the impact of intercenter variation and patient factors on end-of-life care practices for infants who die in regional neonatal intensive care units (NICUs). Study design: We conducted a retrospective cohort analysis using the Children's Hospital Neonatal Database during 2010-2016. A total of 6299 nonsurviving infants cared for in 32 participating regional NICUs were included to examine intercenter variation and the effects of gestational age, race, and cause of death on 3 end-of-life care practices: do not attempt resuscitation orders (DNR), cardiopulmonary resuscitation within 6 hours of death (CPR), and withdrawal of life-sustaining therapies (WLST). Factors associated with these practices were used to develop a multivariable equation.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpeds.2019.10.039" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2019.10.039</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Article
Asselin J
Bartman T
Black person
Brozanski B
Cause Of Death
Central Nervous System
Child
Coghill C H
Cohort Analysis
Controlled Study
Datta A
DiGeronimo R
do not resuscitate order
Drug Withdrawal
Durand D
Dykes F
Evans J
February 2020 List
Female
Fry J T
Gestational Age
Grover T
Human
Infant
injury
Journal of Pediatrics
Leuthner S R
Life Sustaining Treatment
Major Clinical Study
Male
Matoba N
Murthy K
Natarajan G
Neonatal Intensive Care Unit
Newborn
Newborn Death
Niehaus J Z
Padula M
Pallotto E
Piazza A
Reber K
Retrospective Study
Schlegel A B
Shah A
Short B
Sullivan K M
Terminal Care
Zaniletti I
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
November 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2019 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2019-001881" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2019-001881</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Perinatal hypoxic-ischaemic encephalopathy: a national survey of end-of-life decisions and palliative care
Publisher
An entity responsible for making the resource available
BMJ supportive & palliative care.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
decision making; hypothermia; hypoxic ischemic encephalopathy; palliative therapy; article; consensus; controlled study; gestational age; grief; human; interview; nervous system; newborn; nurse; prognosis
Creator
An entity primarily responsible for making the resource
Arnaez J; Herranz-Rubia N; Garcia-Alix A
Description
An account of the resource
Objective To explore end-of-life (EoL) decision-making and palliative care in hypoxic-ischaemic encephalopathy (HIE) nationwide. Methods A cross-sectional national study on moderate-to-severe HIE in newborns ≥35 weeks’ gestational age in 2015, including all 57 level III units that offered hypothermia. Forty-one questions were included to explore how the prognosis is established, as well as timing of the decision-making process, and also how ongoing palliative care is offered. Results The main difficulties in EoL decisions lie in the scarce time to make an early, accurate prognosis. Only 20% shared the neurological prognosis with the parents within 72 hours of life, and in only a third of the centres is the nurse present when the prognostic information is given to the family. Almost 50% do not use protocols to order the EoL process. Practically, all centres (91%) reported taking into account the wishes of the parents. However, in 30% the team does not always reach consensus on how the withdrawal process. Specialised psychological support is available in 54% of the hospitals; in more than 50%, interviews are not arranged to examine the grieving process with parents. Conclusions There are four areas for improvement in the comprehensive, multidisciplinary approach to the EoL decision in the patient with HIE: (1) the need for EoL and interdisciplinary palliative care protocols, (2) participation of nurses in the process and improvement in the nurse–physician communication, (3) psychological support for parents involved in the EoL decisions and (4) implementation of strategies to give support during the grieving process.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjspcare-2019-001881" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-001881</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Arnaez J
Article
BMJ supportive & palliative care.
Consensus
Controlled Study
Decision Making
Garcia-Alix A
Gestational Age
Grief
Herranz-Rubia N
Human
hypothermia
hypoxic ischemic encephalopathy
Interview
Nervous System
Newborn
November 2019 List
Nurse
Palliative Therapy
Prognosis
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
August 2018 List
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.29007.abstract" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.29007.abstract</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Little lights: Hospital bereavement photography program
Publisher
An entity responsible for making the resource available
Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
human; child; female; terminal care; controlled study; major clinical study; gestational age; conference abstract; bereavement; nurse practitioner; mourning; child death; volunteer; burn; e-mail; infant; emergency ward; respiratory therapist; light; photography; hospital personnel; Work engagement
Creator
An entity primarily responsible for making the resource
Vandergrift PS; Bryan D; Bishop C
Description
An account of the resource
Description: Purpose: The Little Lights program is a novel, collaborative, nursing-led bereavement photography service created as a solution to the challenge of providing consistent high-quality bereavement photography for families and their dying infants. Little Lights was created by a multidisciplinary group including a professional photographer, provides professional bereavement photography training to staff, and uses a collaborative model involving photography performed by trained staff and edited by professional photographers to give families beautiful mementos of the brief window of time with their infant. The model provides consistent availability of high quality bereavement photographs validating their baby's life and solidifying the infant's importance within the family (Blood & Cacciatore, 2014). Overcoming the barrier of lack of 24-hour availability of volunteer professional photographers allows increased access for families which aids grieving, mourning, and healing for families who lose their child (Limbo & Kobler, 2010). Subjects: Families with an actively dying or deceased infant regardless of gestational age or physical condition. Women's Center staff who volunteer for training and participation in the program. Design: A nurse led complimentary bereavement photography program designed to function internally by collaboration between hospital staff and volunteer professional photographers. Methods: A multidisciplinary team created training sessions focusing on technical aspects of photography as well as culturally sensitive end-of-life care. Staff participation is voluntary, and a system was created for notification and designation of staff photographers during their normal work hours. A hospital approved form is used to obtain consent and email information from families, the photography session is performed, the images are sent to professional photographers who edit them, and the photographers email the images to the family. Results: Since initiation of the Little Lights program in December 2016 to May 2016, 29 staff from the Women's Center Departments and the Emergency Department have been trained. 21 of those trained were nurses, and other staff trained include physicians, respiratory therapists, nurse practitioners, unit secretaries, and volunteers. During this time period, there have been 55 infant deaths, and all families offered the program have consented to photography. All requested sessions have been successfully performed, converted into encrypted files, edited, and dispersed to families. Parental feedback and the described experience of trained hospital staff have been positive. Quality and process improvement is ongoing. Limitations: A current opportunity for improvement is the time needed for editing and delivery of photographs. The goal is to have photographs delivered to families within 72 hours so that they are available for memorial services; however, the current turn-around time is 2 weeks. Other limitations include a misplacement of equipment, rare challenges of staff availability, and the need for ongoing and new training. Implications for Practice: Little Lights addresses common problems experienced by hospitals attempting to provide bereavement photography. It is a sustainable model for the consistent provision of professional quality, compassionate, complimentary bereavement photography. In addition, the program encourages staff engagement with families during their time of need, participation in the grief process, and may help decrease symptoms of staff burn-out.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2018.29007.abstract" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.29007.abstract</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
August 2018 List
Bereavement
Bishop C
Bryan D
burn
Child
Child Death
conference abstract
Controlled Study
E-mail
Emergency Ward
Female
Gestational Age
hospital personnel
Human
Infant
Journal of Palliative Medicine
Light
Major Clinical Study
mourning
Nurse Practitioner
Photography
respiratory therapist
Terminal Care
Vandergrift PS
Volunteer
Work engagement
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
October 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2018 List
URL Address
<a href="http://doi.org/10.1186/s12887-018-1168-x" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1186/s12887-018-1168-x</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
End-of-life decisions and practices for very preterm infants in the Wallonia-Brussels Federation of Belgium
Publisher
An entity responsible for making the resource available
BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Brussels Capital Region; prematurity; Wallonia; article; clinical practice; female; gestational age; human; infant; major clinical study; male; neonatologist; neonatology; newborn; palliative therapy; perinatal period; qualitative research; questionnaire; terminal care; uncertainty
Creator
An entity primarily responsible for making the resource
Aujoulat I; Henrard S; Charon A; Johansson AB; Langhendries JP; Mostaert A; Vermeylen D; Verellen G; Maton P; Van Overmeire B; Kalenga M; Broux I; Henrion E; Dussart A; Muller MF; Cavatorta E; Marechal Y; Vanden ES; Lecart C; Haumont D; Van Herreweghe I; Vlieghe V; Debauche C; Flausch M; Sepulchre B
Description
An account of the resource
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 perinatal period, whether or not to actively manage a baby born very prematurely and (ii) during the postnatal period, whether or not to continue a curative treatment plan initiated at birth. The Wallonia-Brussels Federation in Belgium counts 11 neonatal intensive care units. Methods: An inventory of key practices was compiled on the basis of an online questionnaire that was sent to the 65 neonatologists working in these units. The questionnaire investigated care-related decisions and practices during the antenatal, perinatal and postnatal periods, as well as personal opinions on the possibility of standardising and/or legislating for end-of-life decisions and practices. The participation rate was 89% (n = 58). Results: The results show a high level of homogeneity pointing to overall agreement on the main principles governing curative practice and the gestational age that can be actively managed given the current state of knowledge. There was, however, greater diversity regarding principles governing the transition to end-of-life care, as well as opinions about the need for a common protocol or law to govern such practices. Conclusion: Our results reflect the uncertainty inherent in the complex and diverse situations that are encountered in this extreme area of clinical practice, and call for qualitative research and expert debates to further document and make recommendations for best practices regarding several "gray zones" of end-of-life care in neonatology, so that high quality palliative care may be granted to all neonates concerned with end-of-life decisions.Copyright © 2018 The Author(s).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12887-018-1168-x" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1168-x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Article
Aujoulat I
Bmc Pediatrics
Broux I
Brussels Capital Region
Cavatorta E
Charon A
Clinical Practice
Debauche C
Dussart A
Female
Flausch M
Gestational Age
Haumont D
Henrard S
Henrion E
Human
Infant
Johansson AB
Kalenga M
Langhendries JP
Lecart C
Major Clinical Study
Male
Marechal Y
Maton P
Mostaert A
Muller MF
Neonatologist
Neonatology
Newborn
Palliative Therapy
perinatal period
Prematurity
Qualitative Research
Questionnaire
September 2018 List
Sepulchre B
Terminal Care
Uncertainty
Van Herreweghe I
Van Overmeire B
Vanden ES
Verellen G
Vermeylen D
Vlieghe V
Wallonia
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1053/j.semperi.2013.07.007" target="_blank" rel="noreferrer">http://doi.org/10.1053/j.semperi.2013.07.007</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology
Publisher
An entity responsible for making the resource available
Seminars In Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Emotions; Communication; Neonatology; empathy; cardiopulmonary resuscitation; gestational age; NICU; bronchopulmonary dysplasia; CPR; end of life decisions; Extreme prematurity; extremely low-gestational-age infants; Family Centered Care; Life-sustaining interventions; necrotizing enterocolitis; Personalized medicine; Withhold and withdraw intensive care
Creator
An entity primarily responsible for making the resource
Janvier A; Barrington K; Farlow B
Description
An account of the resource
The nature and content of the conversations between the healthcare team and the parents concerning withholding or withdrawing of life-sustaining interventions for neonates vary greatly. These depend upon the status of the infant; for some neonates, death may be imminent, while other infants may be relatively stable, yet with a potential risk for surviving with severe disability. Healthcare providers also need to communicate with prospective parents before the birth of premature infants or neonates with uncertain outcomes. Many authors recommend that parents of fragile neonates receive detailed information about the potential outcomes of their children and the choices they have provided in an unbiased and empathetic manner. However, the exact manner this is to be achieved in clinical practice remains unclear. Parents and healthcare providers may have different values regarding the provision of life-sustaining interventions. However, parents base their decisions on many factors, not just probabilities. The role of emotions, regret, hope, quality of life, resilience, and relationships is rarely discussed. End-of-life discussions with parents should be individualized and personalized. This article suggests ways to personalize these conversations. The mnemonic "SOBPIE" may help providers have fruitful discussions: (1) What is the Situation? Is the baby imminently dying? Should withholding or withdrawing life-sustaining interventions be considered? (2) Opinions and options: personal biases of healthcare professionals and alternatives for patients. (3) Basic human interactions. (4) Parents: their story, their concerns, their needs, and their goals. (5) Information: meeting parental informational needs and providing balanced information. (6) Emotions: relational aspects of decision making which include the following: emotions, social supports, coping with uncertainty, adaptation, and resilience. In this paper, we consider some aspects of this complex process.
2014-02
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1053/j.semperi.2013.07.007" target="_blank" rel="noreferrer">10.1053/j.semperi.2013.07.007</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2014
Backlog
Barrington K
Bronchopulmonary Dysplasia
Cardiopulmonary Resuscitation
Communication
CPR
Emotions
Empathy
end of life decisions
Extreme Prematurity
extremely low-gestational-age infants
Family Centered Care
Farlow B
Gestational Age
Janvier A
Journal Article
Life-sustaining Interventions
Necrotizing Enterocolitis
Neonatology
Nicu
Personalized medicine
Seminars in Perinatology
Withhold and withdraw intensive care
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2018 List
URL Address
<a href="http://doi.org/10.1055/s-0036-1586753" target="_blank" rel="noreferrer">http://doi.org/10.1055/s-0036-1586753</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Neonatal Hospital Course and Outcomes of Live-born Infants with Trisomy 18 at Two Tertiary Care Centers in the United States
Publisher
An entity responsible for making the resource available
American Journal Of Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Birth Weight; Patient Discharge; Artificial; Cardiotonic Agents/therapeutic use; Congenital/etiology; Female; gestational age; Heart Defects; Humans; infant; infant death; Intensive Care Units; Length of Stay; Live Birth; Male; Neonatal; Newborn; Perinatal Death; Respiration; Sex Factors; Survival Rate; Tertiary Care Centers; Trisomy 18 Syndrome/complications/ therapy; United States
Creator
An entity primarily responsible for making the resource
Dereddy NR; Pivnick EK; Upadhyay K; Dhanireddy R; Talati AJ
Description
An account of the resource
Objectives Trisomy 18 is presumed to be a lethal chromosomal abnormality; medical management of infants with this aneuploidy is controversial. Our objective was to describe our approach and experience with trisomy 18 infants. Study Design We reviewed the initial hospital course, management, and factors predicting discharge from the hospital from two large tertiary care neonatal intensive care units in the southern United States over 26 years. Results Of the 29 infants with trisomy 18, 21 (72%) died in the hospital and 8 (28%) were discharged home. 19 (66%) infants received mechanical ventilation and 10 (34%) received inotropic medications. Eight infants had critical congenital heart defects; only one survived to discharge. Three infants underwent major surgeries; one cardiac surgery, one tracheoesophageal fistula repair, and one myelomeningocele repair. Median length of hospital stay was 14 days (range, 0-78) for all the infants and 31 days (range, 18-66) for those that were discharged home. Factors associated with discharge from the hospital were female sex, higher gestational age, and absence of critical congenital heart defects. Median survival time was 13 days and was significantly longer for females compared with males. Our 1-month and 1-year survival rates were 31% and 3.9% respectively. Conclusion A significant proportion of infants with trisomy 18 were discharged home. These data are helpful in counseling parents of infants with trisomy 18.
2017-02
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1055/s-0036-1586753" target="_blank" rel="noreferrer">10.1055/s-0036-1586753</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
American Journal of Perinatology
Artificial
Birth Weight
Cardiotonic Agents/therapeutic use
Congenital/etiology
Dereddy NR
Dhanireddy R
Female
Gestational Age
Heart Defects
Humans
Infant
Infant Death
Intensive Care Units
Length Of Stay
Live Birth
Male
March 2018 List
Neonatal
Newborn
Patient Discharge
Perinatal Death
Pivnick EK
Respiration
Sex Factors
Survival Rate
Talati AJ
Tertiary Care Centers
Trisomy 18 Syndrome/complications/ therapy
United States
Upadhyay K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2018 List
URL Address
<a href="http://doi.org/10.1542/peds.2012-0981" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2012-0981</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Neonatal end-of-life care: A single-center NICU experience in Israel over a decade
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
newborn care; newborn mortality; adrenal insufficiency/ep [Epidemiology]; anemia/ep [Epidemiology]; Article; brain edema/ep [Epidemiology]; brain hemorrhage/ep [Epidemiology]; cause of death; child parent relation; congenital malformation/ep [Epidemiology]; gestational age; Human; Incidence; Israel; Jerusalem; kidney failure/ep [Epidemiology]; Medical Decision Making; Middle East; necrotizing enterocolitis/ep [Epidemiology]; Newborn; newborn death; newborn hypoxia/ep [Epidemiology]; Newborn Intensive Care; newborn sepsis/ep [Epidemiology]; practice guideline; prematurity; priority journal; quality of life; Religion; respiratory failure/ep [Epidemiology]; sepsis/ep [Epidemiology]; shock/ep [Epidemiology]; treatment duration
Creator
An entity primarily responsible for making the resource
Eventov-Friedman S; Kanevsky H; Bar-Oz B
Description
An account of the resource
OBJECTIVES: To follow changes in the causes of neonatal deaths in the NICU at Hadassah Medical Center, Jerusalem, Israel, over a decade; to examine trends regarding types of end-of-life-care provided (primary nonintervention, maximal intensive, and redirection of intensive care, including limitation of care and withdrawal of life-sustaining treatment); and to assess the parental role in the decision-making process given that the majority of the population is religious. METHODS: All neonates who died between 2000 and 2009 were identified. The causes and circumstances of death were Abstract: ed from the medical records. Trends in end-of-life decisions were compared between 2 time periods: 2000-2004 versus 2005-2009. RESULTS: Overall, 239 neonates died. The leading cause of death in both study periods was prematurity and its complications (76%). Among term infants, the leading cause of death was congenital anomalies (48%). Fifty-six percent of the infants received maximal intensive care; 28% had redirection of intensive care, of whom 10% had withdrawal of life-sustaining treatment; and 16% had primary nonintervention care. Over the years, maximal intensive care decreased from 65% to 46% (P < .02), whereas redirection of care increased from 19.2% to 37.5% (P < .0005). An active parental role in the end-of-life decision process increased from 38% to 84%. CONCLUSIONS: Even among religious families of extremely sick neonates, redirection of care is a feasible treatment option, suggesting that apart from survival, quality-of-life considerations emerge as an important factor in the decision-making process for the infant, parents, and caregivers.
2013-06
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2012-0981" target="_blank" rel="noreferrer">10.1542/peds.2012-0981</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2013
adrenal insufficiency/ep [Epidemiology]
anemia/ep [Epidemiology]
Article
Bar-Oz B
brain edema/ep [Epidemiology]
brain hemorrhage/ep [Epidemiology]
Cause Of Death
Child Parent Relation
congenital malformation/ep [Epidemiology]
Eventov-Friedman S
Gestational Age
Human
Incidence
Israel
Jerusalem
Kanevsky H
kidney failure/ep [Epidemiology]
March 2018 List
Medical Decision Making
Middle East
necrotizing enterocolitis/ep [Epidemiology]
Newborn
Newborn Care
Newborn Death
newborn hypoxia/ep [Epidemiology]
Newborn Intensive Care
newborn mortality
newborn sepsis/ep [Epidemiology]
Pediatrics
Practice Guideline
Prematurity
Priority Journal
Quality Of Life
Religion
respiratory failure/ep [Epidemiology]
sepsis/ep [Epidemiology]
shock/ep [Epidemiology]
treatment duration
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2009.07.019" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpeds.2009.07.019</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Categorizing neonatal deaths: a cross-cultural study in the United States, Canada, and The Netherlands.
Publisher
An entity responsible for making the resource available
The Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Female; Humans; infant; Male; United States; Intensive Care Units; Terminal Care; Canada; Netherlands; Cross-Cultural Comparison; Respiration; Neonatal; decision making; Newborn; gestational age; Artificial; Withholding Treatment/statistics & numerical data; Physician Assisted Dying PAD; decision making; Diseases/mortality; Diseases/mortality; Withholding Treatment/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Verhagen AAE; Janvier A; Leuthner SR; Andrews B; Lagatta J; Bos AF; Meadow W
Description
An account of the resource
OBJECTIVE: To clarify the process of end-of-life decision-making in culturally different neonatal intensive care units (NICUs). STUDY DESIGN: Review of medical files of newborns >22 weeks gestation who died in the delivery room (DR) or the NICU during 12 months in 4 NICUs (Chicago, Milwaukee, Montreal, and Groningen). We categorized deaths using a 2-by-2 matrix and determined whether mechanical ventilation was withdrawn/withheld and whether the child was dying despite ventilation or physiologically stable but extubated for neurological prognosis. RESULTS: Most unstable patients in all units died in their parents' arms after mechanical ventilation was withdrawn. In Milwaukee, Montreal, and Groningen, 4% to 12% of patients died while receiving cardiopulmonary resuscitation. This proportion was higher in Chicago (31%). Elective extubation for quality-of-life reasons never occurred in Chicago and occurred in 19% to 35% of deaths in the other units. The proportion of DR deaths in Milwaukee, Montreal, and Groningen was 16% to 22%. No DR deaths occurred in Chicago. CONCLUSIONS: Death in the NICU occurred differently within and between countries. Distinctive end-of-life decisions can be categorized separately by using a model with uniform definitions of withholding/withdrawing mechanical ventilation correlated with the patient's physiological condition. Cross-cultural comparison of end-of-life practice is feasible and important when comparing NICU outcomes.
2010-01
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpeds.2009.07.019" target="_blank" rel="noreferrer">10.1016/j.jpeds.2009.07.019</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2010
Andrews B
Artificial
Backlog
Bos AF
Canada
Cross-cultural Comparison
Decision Making
Diseases/mortality
Female
Gestational Age
Humans
Infant
Intensive Care Units
Janvier A
Journal Article
Lagatta J
Leuthner SR
Male
Meadow W
Neonatal
Netherlands
Newborn
Physician Assisted Dying PAD
Respiration
Terminal Care
The Journal Of Pediatrics
United States
Verhagen AAE
Withholding Treatment/statistics & Numerical Data
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1002/ajmg.a.31173" target="_blank" rel="noreferrer">http://doi.org/10.1002/ajmg.a.31173</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Clinical characteristics and survival of trisomy 18 in a medical center in Taipei, 1988-2004.
Publisher
An entity responsible for making the resource available
American Journal Of Medical Genetics.Part A
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Survival Rate; Pregnancy; Adult; Middle Aged; Prenatal Diagnosis; Survival Analysis; Longitudinal Studies; Time Factors; Hospitals; Birth Weight; Preschool; infant; Newborn; retrospective studies; Abnormalities; Brain Diseases/ultrasonography; Child Health Services/economics/organization & administration/statistics & numerical data; Chromosomes; Congenital/ultrasonography; gestational age; Heart Defects; Human; Karyotyping; Maternal Age; Multiple/genetics/mortality/pathology; Pair 18/genetics; Paternal Age; Taiwan; Trisomy/diagnosis/genetics; Ultrasonography/methods
Creator
An entity primarily responsible for making the resource
Lin HY; Lin SP; Chen YJ; Hung HY; Kao HA; Hsu CH; Chen MR; Chang JH; Ho CS; Huang FY; Shyur SD; Lin DS; Lee HC
Description
An account of the resource
Trisomy 18 is the second most common autosomal trisomy in newborns. The birth prevalence of this disorder is approximately 1 in 3,000 to 1 in 8,000, and the life span of the majority of patients is less than 1 year. As information regarding outcome in trisomy 18 is rather fragmentary in the literature, this study is aimed at investigating the survival and natural history of trisomy 18. We also evaluated the survival age and management of trisomy 18 in two different periods, before and after the implementation of National Health Insurance (NHI) program. Thirty-nine cases of trisomy 18 were collected in Mackay Memorial Hospital in a 17-year period, from 1988 to 2004. Delivery data, survival age, management before and after the implementation of NHI program, structural defects, image findings and cytogenetic results were analyzed by medical and nurse's records. The diagnosis of trisomy 18 was based on the prenatal amniocentesis or postnatal chromosome analysis. Three patients had trisomy 18 mosaicism. Since cardiovascular and central nervous systems are the most common organ systems involved in this disorder, 31 patients received brain ultrasonography and heart ultrasonography for evaluation of their multiple anomalies after admission. All patients except one died in their first year due to severe malformations of the cardiovascular or central nervous systems. The median survival age was 6 days. We found a longer survival with female patients than with male patients (P < 0.05). Implementation of NHI program in the more recent decade of this study period was associated with longer survival of trisomy 18 (P < 0.05). The three most common structural defects were clenched hands (95%), rocker bottom feet (90%), and low set or malformed ears (90%). Low birth weight was present in 90%. By cardiac ultrasonography, the top four heart defects were ventricular septal defect (94%), patent ductus arteriosus (77%) and atrial septal defect (68%). However, ten cases (32%) had complex congenital heart defects. By brain ultrasonography, the most common brain lesion was cerebellar hypoplasia (32%), followed by brain edema (29%), enlarged cisterna magna (26%) and choroid plexus cysts (19%). Although most patients with trisomy 18 die within the first few weeks after birth, it is important to recognize that a small but notable percentage of these patients will survive the first year. When prenatal or postnatal decisions need to be made, the possibility of long-term survival should be included in any discussion to enable families to make the most appropriate decision.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/ajmg.a.31173" target="_blank" rel="noreferrer">10.1002/ajmg.a.31173</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2006
Abnormalities
Adult
American Journal Of Medical Genetics.Part A
Backlog
Birth Weight
Brain Diseases/ultrasonography
Chang JH
Chen MR
Chen YJ
Child
Child Health Services/economics/organization & administration/statistics & numerical data
Chromosomes
Congenital/ultrasonography
Female
Gestational Age
Heart Defects
Ho CS
Hospitals
Hsu CH
Huang FY
Human
Humans
Hung HY
Infant
Journal Article
Kao HA
Karyotyping
Lee HC
Lin DS
Lin HY
Lin SP
Longitudinal Studies
Male
Maternal Age
Middle Aged
Multiple/genetics/mortality/pathology
Newborn
Pair 18/genetics
Paternal Age
Pregnancy
Prenatal Diagnosis
Preschool
Retrospective Studies
Shyur SD
Survival Analysis
Survival Rate
Taiwan
Time Factors
Trisomy/diagnosis/genetics
Ultrasonography/methods
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1002/ajmg.a.31175" target="_blank" rel="noreferrer">http://doi.org/10.1002/ajmg.a.31175</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Neonatal management of trisomy 18: Clinical details of 24 patients receiving intensive treatment.
Publisher
An entity responsible for making the resource available
American Journal Of Medical Genetics.Part A
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Female; Humans; infant; Male; Survival Rate; Pregnancy; Prognosis; Prenatal Diagnosis; Survival Analysis; Longitudinal Studies; Birth Weight; Newborn; cause of death; Chromosomes; gestational age; Human; Pair 18/genetics; Trisomy/diagnosis/genetics; Children W/SNI; Chromosome Disorders/genetics/mortality/therapy; Fetal Diseases/diagnosis/genetics
Creator
An entity primarily responsible for making the resource
Kosho T; Nakamura T; Kawame H; Baba A; Tamura M; Fukushima Y
Description
An account of the resource
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, we reviewed detailed clinical data of 24 patients with full trisomy 18 admitted to the neonatal intensive care unit of Nagano Children's Hospital, providing intensive treatment to those with trisomy 18, from 1994 to 2003. Cesarean, resuscitation by intubation, and surgical operations were performed on 16 (67%), 15 (63%), and 10 (42%) of the patients, respectively. Mechanical ventilation was required by 21 (88%), and 6 (29%) of them were extubated. Survival rate at age 1 week, 1 month, and 1 year was 88%, 83%, and 25%, respectively. Median survival time was 152.5 days. Respiration was not stabilized in two patients with left diaphragmatic eventration and hypoplasia accompanied by lung hypoplasia, even with maximal ventilation. The common underlying factors associated with death were congenital heart defects and heart failure (96%), followed by pulmonary hypertension (78%). The common final modes of death were sudden cardiac or cardiopulmonary arrest (26%) and possible progressive pulmonary hypertension-related events (26%). These data of improved survival, through neonatal intensive treatment, are helpful for clinicians to offer the best information on treatment options to families of patients with trisomy 18.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/ajmg.a.31175" target="_blank" rel="noreferrer">10.1002/ajmg.a.31175</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2006
American Journal Of Medical Genetics.Part A
Baba A
Backlog
Birth Weight
Cause Of Death
Children W/SNI
Chromosome Disorders/genetics/mortality/therapy
Chromosomes
Female
Fetal Diseases/diagnosis/genetics
Fukushima Y
Gestational Age
Human
Humans
Infant
Journal Article
Kawame H
Kosho T
Longitudinal Studies
Male
Nakamura T
Newborn
Pair 18/genetics
Pregnancy
Prenatal Diagnosis
Prognosis
Survival Analysis
Survival Rate
Tamura M
Trisomy/diagnosis/genetics
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
February 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2018 List
URL Address
<a href="http://doi.org/10.1136/bmjopen-2015-010996" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmjopen-2015-010996</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Impact of holding the baby following stillbirth on maternal mental health and well-being: findings from a national survey
Publisher
An entity responsible for making the resource available
Bmj Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Bereavement; care practice; hold; infant contact; Stillbirth; touch; adolescent; Adult; Anxiety/epidemiology; Cross-Sectional Studies; Depression/epidemiology; England; Family Conflict/psychology; Female; gestational age; Health Surveys; Humans; infant; Mother-Child Relations/ psychology; Mothers/ psychology; Newborn; Postpartum Period/ psychology; Post-traumatic; Post-Traumatic/epidemiology; Pregnancy; Qualitative Research; Self-Fertilization; self report; stillbirth; Stillbirth/ psychology; Stress Disorders; Touch; Young Adult
Creator
An entity primarily responsible for making the resource
Redshaw M; Hennegan JM; Henderson J
Description
An account of the resource
OBJECTIVES: To compare mental health and well-being outcomes at 3 and 9 months after the stillbirth among women who held or did not hold their baby, adjusting for demographic and clinical differences. DESIGN: Secondary analyses of data from a postal population survey. POPULATION: Women with a registered stillbirth in England in 2012. METHODS: 468 eligible responses were compared. Differences in demographic, clinical and care characteristics between those who held or did not hold their infant were described and adjusted for in subsequent analysis. Mental health and well-being outcomes were compared, and subgroup comparisons tested hypothesised moderating factors. OUTCOME MEASURES: Self-reported depression, anxiety, post-traumatic stress disorder (PTSD) symptoms and relationship difficulties. RESULTS: There was a 30.2% response rate to the survey. Most women saw (97%, n=434) and held (84%, n=394) their baby after stillbirth. There were some demographic differences with migrant women, women who had a multiple birth and those whose pregnancy resulted from fertility treatment being less likely to hold their baby. Women who held their stillborn baby consistently reported higher rates of mental health and relationship difficulties. After adjustment, women who held their baby had 2.12 times higher odds (95% CI 1.11 to 4.04) of reporting anxiety at 9 months and 5.33 times higher odds (95% CI 1.26 to 22.53) of reporting relationship difficulties with family. Some evidence for proposed moderators was observed with poorer mental health reported by women who had held a stillborn baby of <33 weeks' gestation, and those pregnant at outcome assessment. CONCLUSIONS: This study supports concern about the negative impact of holding the infant after stillbirth. Results are limited by the observational nature of the study, survey response rate and inability to adjust for women's baseline anxiety. Findings add important evidence to a mixed body of literature.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjopen-2015-010996" target="_blank" rel="noreferrer">10.1136/bmjopen-2015-010996</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Adolescent
Adult
Anxiety/epidemiology
Bereavement
Bmj Open
care practice
Cross-sectional Studies
Depression/epidemiology
England
Family Conflict/psychology
February 2018 List
Female
Gestational Age
Health Surveys
Henderson J
Hennegan JM
hold
Humans
Infant
infant contact
Mother-Child Relations/ psychology
Mothers/ Psychology
Newborn
Post-traumatic
Post-Traumatic/epidemiology
Postpartum Period/ psychology
Pregnancy
Qualitative Research
Redshaw M
Self Report
Self-Fertilization
Stillbirth
Stillbirth/ psychology
Stress Disorders
touch
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
January 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2018 List
URL Address
<a href="http://doi.org/10.1007/s00431-006-0190-4" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00431-006-0190-4</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Consultation of Parents in Actual End-Of-Life Decision-Making in Neonates and Infants
Publisher
An entity responsible for making the resource available
European Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Critical Illness/th [Therapy]; Decision Making; Parents/px [Psychology]; Terminal Care; Belgium; gestational age; Humans; infant; Infant Newborn; Life Support Care/px [Psychology]; Medical Futility/px [Psychology]; Physician-Patient Relations; retrospective studies; Surveys and Questionnaires; Terminal Care/px [Psychology]; Withholding Treatment
Creator
An entity primarily responsible for making the resource
Provoost V; Cools F; Deconinck P; Ramet J; Deschepper R; Bilsen J; Mortier F; Vandenplas Y; Deliens L
Description
An account of the resource
The objective of this study was to assess how frequently end-of-life decisions (ELDs) with a possible or certain life-shortening effect in neonates and infants were discussed with parents, and to determine if consultation of parents was associated with the type of ELD, (clinical) characteristics of the patient, and socio-demographic characteristics of the physician. A retrospective study of all deaths of live born infants under the age of one year was conducted in Flanders, Belgium. For 292 of all 298 deaths in a 1-year period (between 1 August 1999 and 31 July 2000) the attending physician could be identified and was sent an anonymous questionnaire. All cases with an ELD and containing information regarding the consultation of parents were included. The response rate was 87% (253/292). In 136 out of 143 cases, an ELD was made and information on the consultation of parents was obtained. According to the physician, the ELD was discussed with parents in 84% (114/136) of cases. The smaller the gestational age of the infant, the more the parental request for an ELD was explicit (p=0.025). When parents were not consulted, the ELD was based more frequently on the fact that the infant had no chance to survive and less on quality-of-life considerations (p=0.001); the estimated shortening of life due to the ELD was small in all cases, but significantly smaller (p<0.001) if parents were not consulted. It is concluded that the majority of parents of children dying under the age of one year are consulted in ELD-making, especially for decisions based on quality-of-life considerations (95.1%). Parents of infants with a small gestational age more often explicitly requested an ELD.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00431-006-0190-4" target="_blank" rel="noreferrer noopener">10.1007/s00431-006-0190-4</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2006
Belgium
Bilsen J
Cools F
Critical Illness/th [therapy]
Decision Making
Deconinck P
Deliens L
Deschepper R
European Journal of Pediatrics
Gestational Age
Humans
Infant
Infant Newborn
January 2018 List
Life Support Care/px [Psychology]
Medical Futility/px [Psychology]
Mortier F
Parents/px [psychology]
Physician-patient Relations
Provoost V
Ramet J
Retrospective Studies
Surveys And Questionnaires
Terminal Care
Terminal Care/px [psychology]
Vandenplas Y
Withholding Treatment
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
January 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2018 List
URL Address
<a href="http://doi.org/10.7748/ncyp.28.7.51.s26" target="_blank" rel="noreferrer">http://doi.org/10.7748/ncyp.28.7.51.s26</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Legal and ethical issues in neonatal nursing
Publisher
An entity responsible for making the resource available
Nursing Children And Young People
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
gestational age; newborn nursing; Human; Male; Neonatal Intensive Care Unit; neonatal nurse; Newborn; prematurity; Prognosis
Creator
An entity primarily responsible for making the resource
Anonymous
Description
An account of the resource
Neonatal nurses regularly face complex legal and ethical dilemmas. This article discusses the hypothetical case of Jack, a two-day-old infant, born at 39 weeks' gestation, and diagnosed with trisomy 13 (syndrome), a life-limiting condition and being cared for in a neonatal intensive care unit. Jack's prognosis is poor and he is not expected to live past two weeks of age.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.7748/ncyp.28.7.51.s26" target="_blank" rel="noreferrer">10.7748/ncyp.28.7.51.s26</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Anonymous
Gestational Age
Human
January 2018 List
Male
Neonatal Intensive Care Unit
Neonatal Nurse
Newborn
newborn nursing
Nursing Children and Young People
Prematurity
Prognosis
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2017 List
URL Address
<a href="http://pediatrics.aappublications.org/content/early/2017/08/24/peds.2017-1905" target="_blank" rel="noreferrer">http://pediatrics.aappublications.org/content/early/2017/08/24/peds.2017-1905</a>
Notes
<p>Using Smart Source Parsing<br />( (no pagination), Article Number: e20171905. Date of Publication: September 2017</p>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Guidance on forgoing life-sustaining medical treatment
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Apparent Life Threatening Event/th [therapy]; Life-sustaining Medical Treatment; Medical Procedures; Practice Guideline; Article; Awareness; Caregiver; Child Abuse; Child Care; Clinical Decision Making; Comatose Patient; Consensus; Consultation; Critical Illness/th [therapy]; Death; Death By Neurologic Criteria; Developmental Disorder/th [therapy]; Disease Burden; Disease Course; Ethical Decision Making; Extremely Low Gestational Age; Family Decision Making; Family Stress; Foster Care; Gestational Age; Goal Attainment; Health Belief; High Risk Population; Human; Hydration; Imminent Death; Informed Consent; Intensive Care; Interpersonal Communication; Legal Aspect; Medical Ethics; Medical Expert; Medical Information; Medically Administered Nutrition And Hydration; Medical Specialist; Neglect; Neurologic Disease/di [diagnosis]; Nutrition; Oxygenation; Pain/th [therapy]; Palliative Therapy; Patient Care Planning; Pediatrician; Priority Journal; Prognosis; Quality Of Life; Resuscitation; Shared Decision Making; Social Support; Spiritual Care; Survival; Teamwork; Terminal Care; Tissue Perfusion; Uncertain Prognosis
Creator
An entity primarily responsible for making the resource
Weise KL; Okun AL; Carter BS; Christian CW; Katz AL; Laventhal N; MacAuley RC; Moon MR; Opel DJ; Statter MB; Davies D; Dell ML; Diekema DS; Klipstein S; Elster N; Rivera F; Feudtner C; Boss RD; Hauer JM; Humphrey LM; Klick J; Linebarger JS; Parker S; Lord B; Imaizumi S; Guinn-Jones M; Flaherty EG; Gavril AR; Idzerda SM; Laskey A; Legano LA; Leventhal JM; Fortson BL; MacMillan H; Stedt E; Hurley TP
Description
An account of the resource
Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the child leads to an assessment that forgoing life-sustaining medical treatment (LSMT) is ethically supportable or advisable. Parents are given wide latitude in decision-making concerning end-of-life care for their children in most situations. Collaborative decision-making around LSMT is improved by thorough communication among all stakeholders, including medical staff, the family, and the patient, when possible, throughout the evolving course of the patient's illness. Clear communication of overall goals of care is advised to promote agreed-on plans, including resuscitation status. Perceived disagreement among the team of professionals may be stressful to families. At the same time, understanding the range of professional opinions behind treatment recommendations is critical to informing family decision-making. Input from specialists in palliative care, ethics, pastoral care, and other disciplines enhances support for families and medical staff when decisions to forgo LSMT are being considered. Understanding specific applicability of institutional, regional, state, and national regulations related to forgoing LSMT is important to practice ethically within existing legal frameworks. This guidance represents an update of the 1994 statement from the American Academy of Pediatrics on forgoing LSMT.
Identifier
An unambiguous reference to the resource within a given context
<a class="aap-doi-text" href="https://doi.org/10.1542/peds.2017-1905" target="_blank" rel="noreferrer">10.1542/peds.2017-1905</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Apparent Life Threatening Event/th [therapy]
Article
Awareness
Boss RD
Caregiver
Carter BS
Child Abuse
Child Care
Christian CW
Clinical Decision Making
Comatose Patient
Consensus
Consultation
Critical Illness/th [therapy]
Davies D
Death
Death By Neurologic Criteria
Dell ML
Developmental Disorder/th [therapy]
Diekema DS
Disease Burden
Disease Course
Elster N
Ethical Decision Making
Extremely Low Gestational Age
Family Decision Making
Family Stress
Feudtner C
Flaherty EG
Fortson BL
Foster Care
Gavril AR
Gestational Age
Goal Attainment
Guinn-Jones M
Hauer JM
Health Belief
High Risk Population
Human
Humphrey LM
Hurley TP
Hydration
Idzerda SM
Imaizumi S
Imminent Death
Informed Consent
Intensive Care
Interpersonal Communication
Katz AL
Klick J
Klipstein S
Laskey A
Laventhal N
Legal Aspect
Legano LA
Leventhal JM
Life-sustaining Medical Treatment
Linebarger JS
Lord B
MacAuley RC
MacMillan H
Medical Ethics
Medical Expert
Medical Information
Medical Procedures
Medical Specialist
Medically Administered Nutrition And Hydration
Moon MR
Neglect
Neurologic Disease/di [diagnosis]
November 2017 List
Nutrition
Okun AL
Opel DJ
Oxygenation
Pain/th [therapy]
Palliative Therapy
Parker S
Patient Care Planning
Pediatrician
Pediatrics
Practice Guideline
Priority Journal
Prognosis
Quality Of Life
Resuscitation
Rivera F
shared decision making
Social Support
Spiritual Care
Statter MB
Stedt E
Survival
Teamwork
Terminal Care
Tissue Perfusion
Uncertain Prognosis
Weise KL
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Measuring And Communicating Meaningful Outcomes In Neonatology: A Family Perspective
Publisher
An entity responsible for making the resource available
Seminars In Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Parents; Neurodevelopmental Outcomes; Child; Composite End-points; Birth; Down-syndrome; Obstetrics & Gynecology; Extremely Preterm Infants; Of-life Decisions; Pediatrics; Gestational Age
Extreme Prematurity; Congenital Anomalies; Neonatal Intensive Care Unit; Life-sustaining Interventions; End-of-life Decision Making; Disability; Screening; Palliative Care; Family-centered Care; Communication; Empathy
Creator
An entity primarily responsible for making the resource
Annie Janviera; Barbara Farlow; Jason Baardsnesf; Rebecca Pearceg; Keith J Barringtona
Description
An account of the resource
Abstract
Medium- and long-term outcomes have been collected and described among survivors of neonatal intensive care units for decades, for a number of purposes: (1) quality control within units, (2) comparisons of outcomes between NICUs, (3) clinical trials (whether an intervention improves outcomes), (4) end-of-life decision-making, (5) to better understand the effects of neonatal conditions and/or interventions on organs and/or long-term health, and finally (6) to better prepare parents for the future. However, the outcomes evaluated have been selected by investigators, based on feasibility, availability, cost, stability, and on what investigators consider to be important. Many of the routinely measured outcomes have major limitations: they may not correlate well with long-term difficulties, they may artificially divide continuous outcomes into dichotomous ones, and may have no clear relationship with quality of life and functioning of children and their families. Several investigations, such as routine term cerebral resonance imaging for preterm infants, have also not yet been shown to improve the outcome of children nor their families. In this article, the most common variables used in neonatology as well as some variables which are rarely measured but may be of equal importance for families are presented. The manner in which these outcomes are communicated to families will be examined, as well as recommendations to optimize communication with parents.
Abbreviations
BPD, bronchopulmonary dysplasia; BSID, Bayley Scales of Infant Development; GA, gestational age; NDI, neurodevelopmental impairment; NICU, neonatal intensive care unit; ROP, retinopathy of prematurity
Keywords
Extreme prematurity; Congenital anomalies; Neonatal intensive care unit; Life-sustaining interventions; End-of-life decisions; Disability; Screening; Palliative care; Family-centered care; Communication; Empathy
Identifier
An unambiguous reference to the resource within a given context
http://dx.doi.org/10.1053/j.semperi.2016.09.009
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Annie Janviera
Barbara Farlow
Birth
Child
Communication
Composite End-points
Congenital Anomalies
Disability
Down-syndrome
Empathy
End-of-life Decision Making
Extreme Prematurity
Extremely Preterm Infants
Family-centered Care
Gestational Age
Jason Baardsnesf
Keith J Barringtona
Life-sustaining Interventions
Neonatal Intensive Care Unit
Neurodevelopmental Outcomes
Obstetrics & Gynecology
October 2016 List
Of-life Decisions
Palliative Care
Parents
Pediatrics
Rebecca Pearceg
Screening
Seminars in Perinatology
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Delivery Room Practices For Extremely Preterm Infants: The Harms Of The Gestational Age Label.
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood. Fetal And Neonatal Edition
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Delivery Rooms; Europe/epidemiology; Gestational Age; Humans; Infant; Infant Mortality; Infant Extremely Premature; Intensive Care Neonatal; Prognosis; Survival Rate
Children's Rights; Ethics; Neonatology; Palliative Care; Resuscitation
Creator
An entity primarily responsible for making the resource
Janvier A; Lantos J
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1136/archdischild-2016-310466
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Archives of Disease in Childhood. Fetal and Neonatal Edition
Children's Rights
Delivery Rooms
Ethics
Europe/epidemiology
Gestational Age
Humans
Infant
Infant Extremely Premature
Infant Mortality
Intensive Care Neonatal
Janvier A
Lantos J
Neonatology
October 2016 List
Palliative Care
Prognosis
Resuscitation
Survival Rate
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Extremely Premature Birth And The Choice Of Neonatal Intensive Care Versus Palliative Comfort Care: An 18-year Single- Center Experience.
Publisher
An entity responsible for making the resource available
Journal Of Perinatology : Official Journal Of The California Perinatal Association
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adult; Counseling; Decision Making; Female; Gestational Age; Humans; Infant Extremely Premature; Infant Newborn; Intensive Care Units Neonatal/organization & Administration; Oregon; Palliative Care/organization & Administration; Perinatal Care/ethics; Perinatal Care/methods; Pregnancy; Premature Birth/nursing; Resuscitation; Retrospective Studies; Young Adult
Creator
An entity primarily responsible for making the resource
Kaempf JW; Tomlinson MW; Tuohey J
Description
An account of the resource
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 whether any significant family complaints or quality assurance concerns arose.
STUDY DESIGN:
Retrospective chart review, physician and ethicist interview process and database review focused upon our established periviability counseling guidelines that are directive of PCC at 22 weeks gestation and NICU at 26 weeks but supportive of informed family choice of either option at 23, 24 and 25 weeks.
RESULT:
At 22 weeks--all 54 infants had PCC; at 23 weeks--29/78 (37%) chose NICU care, 6/29 (21%) infants survived; at 24 weeks--79/108 (73%) chose NICU care, 47/79 (59%) survived; at 25 weeks--147/153 (96%) chose NICU care, 115/147 (78%) survived; and at 26 weeks--all infants had NICU care, 176/203 (87%) survived. Over 18 years and 606 births, we identified only three significant concerns from families and/or physicians that required formal review.
CONCLUSION:
Most pregnant women and families choose NICU care for their extremely premature infant, but if given the option via shared decision making, a significant proportion will choose PCC at gestational ages that some NICUs mandate resuscitation. We support a reasoned dialogue and bioethical framework that recognizes human values to be irreducibly diverse, sometimes conflicting, and ultimately incommensurable--value pluralism. Respectful shared decision making requires thoughtful and compassionate flexibility, nuanced and individualized suggestions for PCC or NICU and the reduction of hierarchical directives from physicians to families. We continue to advocate and rely upon informed family preference between 23 and 25 weeks gestation in our updated 2015 periviability guidelines.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1038/jp.2015.171
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Adult
Counseling
Decision Making
Female
Gestational Age
Humans
Infant Extremely Premature
Infant Newborn
Intensive Care Units Neonatal/organization & Administration
Journal of perinatology : official journal of the California Perinatal Association
Kaempf JW
March 2016 List
Oregon
Palliative Care/organization & Administration
Perinatal Care/ethics
Perinatal Care/methods
Pregnancy
Premature Birth/nursing
Resuscitation
Retrospective Studies
Tomlinson MW
Tuohey J
Young Adult