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40
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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
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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.
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April 2021 List
URL Address
<a href="http://doi.org/10.1111/apa.15828" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.15828</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
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Swiss neonatal caregivers express diverging views on parental involvement in shared decision-making for extremely premature infants
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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shared decision-making; attitudes; extremely premature infants; neonatal healthcare professionals; parental authority
Creator
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Fauchère JC; Klein SD; Hendriks MJ; Baumann-Hölzle R; Berger TMB; Bucher HU
Description
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AIM: Due to scarce available national data, this study assessed current attitudes of neonatal caregivers regarding decisions on life-sustaining interventions, and their views on parents' aptitude to express their infant's best interest in shared decision-making. METHODS: Self-administered web-based quantitative empirical survey. All 552 experienced neonatal physicians and nurses from all Swiss NICUs were eligible. RESULTS: There was a high degree of agreement between physicians and nurses (response rates 79% and 70%, respectively) that the ability for social interactions was a minimal criterion for an acceptable quality of life. A majority stated that the parents' interests are as important as the child's best interest in shared decision-making. Only a minority considered the parents as the best judges of what is their child's best interest. Significant differences in attitudes and values emerged between neonatal physicians and nurses. The language area was very strongly associated with the attitudes of neonatal caregivers. CONCLUSION: Despite clear legal requirements and societal expectations for shared decision-making, survey respondents demonstrated a gap between their expressed commitment to shared decision-making and their view on parental aptitude to formulate their infant's best interest. National guidelines need to address these barriers to shared decision-making to promote a more uniform nationwide practice.
Identifier
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<a href="http://doi.org/10.1111/apa.15828" target="_blank" rel="noreferrer noopener">10.1111/apa.15828</a>
Rights
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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
Acta Paediatrica
April 2021 List
Attitudes
Baumann-Hölzle R
Berger TMB
Bucher HU
extremely premature infants
Fauchère JC
Hendriks MJ
Klein SD
neonatal healthcare professionals
parental authority
Shared Decision-making
-
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
September 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
October 2018 List
URL Address
<a href="http://doi.org/10.1186/s12887-018-1021-2" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12887-018-1021-2</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
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Patterns of paediatric end-of-life care: A chart review across different care settings in Switzerland
Publisher
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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
terminal care; human; child; female; male; cohort analysis; neurology; newborn; article; neonatology; home care; major clinical study; retrospective study; child care; Switzerland; oncology; resuscitation; medical record review; child death; life sustaining treatment; treatment withdrawal; health care utilization; hospital admission; 103-90-2 (paracetamol); paracetamol; adolescent; infant; intensive care unit; cause of death; length of stay; drug use; cardiology; community care; invasive procedure; narcotic analgesic agent
Creator
An entity primarily responsible for making the resource
Zimmermann K; Cignacco E; Engberg S; Ramelet AS; von der Weid N; Eskola K; Bergstraesser E; Ansari M; Aebi C; Baer R; Popovic MB; Bernet V; Brazzola P; Bucher HU; Buder R; Cagnazzo S; Dinten B; Dorsaz A; Elmer F; Enriquez R; Fahrni-Nater P; Finkbeiner G; Frey B; Frey U; Greiner J; Hassink RI; Keller S; Kretschmar O; Kroell J; Laubscher B; Leibundgut K; Malaer R; Meyer A; Stuessi C; Nelle M; Neuhaus T; Niggli F; Perrenoud G; Pfammatter JP; Plecko B; Rupf D; Sennhauser F; Stade C; Steinlin M; Stoffel L; Thomas K; Vonarburg C; von Vigier R; Wagner B; Wieland J; Wernz B
Description
An account of the resource
Background: Paediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific aspects of paediatric end-of-life care. The aim of this study was to comprehensively describe, explore and compare current practices in paediatric end-of-life care in four distinct diagnostic groups across healthcare settings including all relevant levels of healthcare providers in Switzerland. Methods: In this nationwide retrospective chart review study, data from paediatric patients who died in the years 2011 or 2012 due to a cardiac, neurological or oncological condition, or during the neonatal period were collected in 13 hospitals, two long-term institutions and 10 community-based healthcare service providers throughout Switzerland. Results: Ninety-three (62%) of the 149 reviewed patients died in intensive care units, 78 (84%) of them following withdrawal of life-sustaining treatment. Reliance on invasive medical interventions was prevalent, and the use of medication was high, with a median count of 12 different drugs during the last week of life. Patients experienced an average number of 6.42 symptoms. The prevalence of various types of symptoms differed significantly among the four diagnostic groups. Overall, our study patients stayed in the hospital for a median of six days during their last four weeks of life. Seventy-two patients (48%) stayed at home for at least one day and only half of those received community-based healthcare. Conclusions: The study provides a wide-ranging overview of current end-of-life care practices in a real-life setting of different healthcare providers. The inclusion of patients with all major diagnoses leading to disease- and prematurity-related childhood deaths, as well as comparisons across the diagnostic groups, provides additional insight and understanding for healthcare professionals. The provision of specialised palliative and end-of-life care services in Switzerland, including the capacity of community healthcare services, need to be expanded to meet the specific needs of seriously ill children and their families.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12887-018-1021-2" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1021-2</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.
103-90-2 (paracetamol)
2018
Adolescent
Aebi C
Ansari M
Article
Baer R
Bergstraesser E
Bernet V
Bmc Pediatrics
Brazzola P
Bucher HU
Buder R
Cagnazzo S
Cardiology
Cause Of Death
Child
Child Care
Child Death
Cignacco E
Cohort Analysis
community care
Dinten B
Dorsaz A
Drug Use
Elmer F
Engberg S
Enriquez R
Eskola K
Fahrni-Nater P
Female
Finkbeiner G
Frey B
Frey U
Greiner J
Hassink RI
Health Care Utilization
Home Care
Hospital Admission
Human
Infant
Intensive Care Unit
invasive procedure
Keller S
Kretschmar O
Kroell J
Laubscher B
Leibundgut K
Length Of Stay
Life Sustaining Treatment
Major Clinical Study
Malaer R
Male
Medical Record Review
Meyer A
narcotic analgesic agent
Nelle M
Neonatology
Neuhaus T
Neurology
Newborn
Niggli F
October 2018 List
Oncology
Paracetamol
Perrenoud G
Pfammatter JP
Plecko B
Popovic MB
Ramelet AS
Resuscitation
Retrospective Study
Rupf D
Sennhauser F
September 2018 List
Stade C
Steinlin M
Stoffel L
Stuessi C
Switzerland
Terminal Care
Thomas K
Treatment Withdrawal
Von der Weid N
von Vigier R
Vonarburg C
Wagner B
Wernz B
Wieland J
Zimmermann 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
September 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
October 2018 List
URL Address
<a href="http://doi.org/10.1186/s12887-018-1040-z" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12887-018-1040-z</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
Decision-making at the limit of viability: Differing perceptions and opinions between neonatal physicians and nurses
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
infant mortality; medical decision making; nurse attitude; physician attitude; adult; article; assisted ventilation; controlled study; enteric feeding; female; hospital policy; human; legal aspect; male; medical practice; neonatal intensive care unit; neonatal nurse; neonatologist; patient participation; prematurity; questionnaire; religion; Switzerland; terminal care; work experience
Creator
An entity primarily responsible for making the resource
Bucher HU; Klein SD; Hendriks MJ; Baumann-Holzle R; Berger TM; Streuli JC; Fauchere JC; Philipp M; Roland N; Renate I; Mathias N; Liliane S; Brigitte S; Kai R; Riccardo P; Matthias R; Magali C; Ulrike S; Gudrun J; Ruth D; Jean-Claude F; Barbara D
Description
An account of the resource
Background: In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits of viability. Shared decision-making regarding these fragile infants between health care professionals and parents has become the preferred model today. However, there is an ongoing ethical debate on how decisions regarding life-sustaining treatment should be reached and who should have the final word when health care professionals and parents do not agree. We designed a survey among neonatologists and neonatal nurses to analyze practices, difficulties and parental involvement in end-of-life decisions for extremely preterm infants. Methods: All 552 physicians and nurses with at least 12 months work experience in level III neonatal intensive care units (NICU) in Switzerland were invited to participate in an online survey with 50 questions. Differences between neonatologists and NICU nurses and between language regions were explored. Results: Ninety six of 121 (79%) physicians and 302 of 431(70%) nurses completed the online questionnaire. The following difficulties with end-of-life decision-making were reported more frequently by nurses than physicians: insufficient time for decision-making, legal constraints and lack of consistent unit policies. Nurses also mentioned a lack of solidarity in our society and shortage of services for disabled more often than physicians. In the context of limiting intensive care in selected circumstances, nurses considered withholding tube feedings and respiratory support less acceptable than physicians. Nurses were more reluctant to give parents full authority to decide on the course of action for their infant. In contrast to professional category (nurse or physician), language region, professional experience and religion had little influence if any on the answers given. Conclusions: Physicians and nurses differ in many aspects of how and by whom end-of-life decisions should be made in extremely preterm infants. The divergencies between nurses and physicians may be due to differences in ethics education, varying focus in patient care and direct exposure to the patients. Acknowledging these differences is important to avoid potential conflicts within the neonatal team but also with parents in the process of end-of-life decision-making in preterm infants born at the limits of viability.Copyright © 2018 The Author(s).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12887-018-1040-z" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1040-z</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.
2018
Adult
Article
assisted ventilation
Barbara D
Baumann-Hölzle R
Berger TM
Bmc Pediatrics
Brigitte S
Bucher HU
Controlled Study
enteric feeding
Fauchère JC
Female
Gudrun J
Hendriks MJ
hospital policy
Human
Infant Mortality
Jean-Claude F
Kai R
Klein SD
Legal Aspect
Liliane S
Magali C
Male
Mathias N
Matthias R
Medical Decision Making
Medical Practice
Neonatal Intensive Care Unit
Neonatal Nurse
Neonatologist
nurse attitude
October 2018 List
Patient Participation
Philipp M
Physician Attitude
Prematurity
Questionnaire
Religion
Renate I
Riccardo P
Roland N
Ruth D
September 2018 List
Streuli JC
Switzerland
Terminal Care
Ulrike S
work experience