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40
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Title
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June 2021 List
Text
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June 2021 List
URL Address
<a href="http://doi.org/10.33612/diss.159020586" target="_blank" rel="noreferrer noopener">http://doi.org/10.33612/diss.159020586</a>
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At the boundaries of life: Suffering and decision-making in children with life-threatening conditions (1-12 years)
Date
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2021
Subject
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communication; end-of-life decision making; life-threatening condition; pediatric; Suffering
Creator
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Brouwer M
Description
An account of the resource
Dying –or the possibility of death— is not a topic often addressed in modern medicine, especially in paediatrics. But when parents and children are faced with a life-threatening condition, difficult decisions may arise. How do parents and physicians navigate the field between care and end-of-life decisions? Knowledge about care and end-of-life decisions in children is very limited, especially for children between 1 and 12 years. In this thesis, various aspects of care, communication, suffering and decision-making for children (1-12y) with life-threatening conditions are explored. The need for knowledge was emphasized by developments in paediatric euthanasia. In 2014, the Belgian parliament amended their laws on euthanasia to include competent minors. This amendment sparked a debate in the Netherlands on paediatric euthanasia. In our study we found that some parents and physicians had witnessed unbearable suffering in children, and expressed a need for expanding regulations on active ending of life. In 2019, we reported our findings to the Dutch minister. Recently, the Minister announced to expand regulations on active life-ending to include children between the age of 1 and 12 in rare cases of unbearable suffering. However, active life-ending is merely a part of a larger context of care and decision-making. Parents and physicians express a need for clarity and guidance in all aspects of care and decision-making around the end of life. Care and decision-making can, and should be further developed to suit the needs of children with life-threatening conditions, in all stages of their illness.
Identifier
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<a href="http://doi.org/10.33612/diss.159020586" target="_blank" rel="noreferrer noopener">10.33612/diss.159020586</a>
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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
Brouwer M
Communication
End-of-life Decision Making
June 2021 List
Life-threatening Condition
Pediatric
Suffering
-
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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August 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
August 2020 List
URL Address
<a href="http://doi.org/10.5708/EJMH.14.2019.2.6" target="_blank" rel="noreferrer noopener">http://doi.org/10.5708/EJMH.14.2019.2.6</a>
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Title
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The impact of ethical and legal decision-making in neonatal intensive care on psychosocial wellbeing of the health care professionals the overview of the HUNIC Project study design
Publisher
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European Journal of Mental Health
Date
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2019
Subject
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ethics; social support; neonatal intensive care; end-of-life decision making; job satisfaction; neonatologists; health behavior; medical personnel; study design; well-being of health workers
Creator
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Feith H J; Kiss Z S; Pilling J; Kovacs A; Szabo M; Cuttini M; Berbik I; Gezsi A; Gradvohl E
Description
An account of the resource
The paper introduces the multidisciplinary HUNIC project, which is partly based on the EURONIC study. The objective of the HUNIC study is to assess the attitude and opinion of healthcare providers in Hungarian NICUs about end-of-life decisions, the decision-making process, parental communication, to analyse the differences between HUNIC results in 2015-2016 and EURONIC results in 1996-1997, to compare the attitudes of neonatologists and neonatal nurses, and to identify factors that might affect those attitudes and opinions. A further important objective of the HUNIC study is to compare these attitudes and opinions of neonatal care providers with their personal work experience, educational background in the bioethics field, social support, work and life satisfaction, burnout, health behaviour and psychosocial health. This paper aims to present the methodology of an extensive, complex, and multidisciplinary survey (HUNIC) within the framework of the EURONIC. Copyright © 2019 Semmelweis University Institute of Mental Health, Budapest
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.5708/EJMH.14.2019.2.6" target="_blank" rel="noreferrer noopener">10.5708/EJMH.14.2019.2.6</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
August 2020 List
Berbik I
Cuttini M
End-of-life Decision Making
Ethics
European Journal of Mental Health
Feith H J
Gezsi A
Gradvohl E
Health Behavior
Job Satisfaction
Kiss Z S
Kovacs A
medical personnel
neonatal intensive care
Neonatologists
Pilling J
Social Support
Study Design
Szabo M
well-being of health workers
-
Dublin Core
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Title
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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/10.1177/1359105314550349" target="_blank" rel="noreferrer">http://doi.org/10.1177/1359105314550349</a>
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Development and validation of the Communicating with Family about Brain Death Scale
Publisher
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Journal Of Health Psychology
Date
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2016
Subject
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Communication; Family; Tissue and Organ Procurement; adolescent; Adult; Attitudes; brain-dead organ donation; Brain Death/ diagnosis; communicating with family about brain death; Cross-Sectional Studies; decision making; end-of-life decision making; FACTOR analysis; Female; first-person organ donation consent laws; Health Knowledge; Humans; Male; Middle Aged; misconceptions about brain death; Practice; Reproducibility of Results; statistical; Young Adult
Creator
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Bresnahan M; Zhuang J
Description
An account of the resource
This study reports development of a scale assessing communication with family about brain-dead organ donation. Two cross-sectional studies demonstrated scale validity. Tests of internal, external, and predictive validity were conducted using confirmatory factor analysis. In both studies, the same 6 items were shown to be unidimensional with acceptable reliability. Parallelism was shown between the Brain Death Scale and a measure of communication with family. Predictive validity was exhibited between participants' donor status and the Brain Death Scale. The scale was associated with knowledge about brain death confirming misconceptions about brain-dead organ donation.
2016-07
Identifier
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<a href="http://doi.org/10.1177/1359105314550349" target="_blank" rel="noreferrer">10.1177/1359105314550349</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
Attitudes
Brain Death/ diagnosis
brain-dead organ donation
Bresnahan M
communicating with family about brain death
Communication
Cross-sectional Studies
Decision Making
End-of-life Decision Making
Factor Analysis
Family
Female
first-person organ donation consent laws
Health Knowledge
Humans
Journal Of Health Psychology
Male
March 2018 List
Middle Aged
misconceptions about brain death
Practice
Reproducibility of Results
statistical
Tissue and Organ Procurement
Young Adult
Zhuang J
-
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
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Title
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Measuring And Communicating Meaningful Outcomes In Neonatology: A Family Perspective
Publisher
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Seminars In Perinatology
Date
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2016
Subject
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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
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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
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http://dx.doi.org/10.1053/j.semperi.2016.09.009
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).
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
August 2016 List
Dublin Core
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Title
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Parental Hopes, Interventions, And Survival Of Neonates With Trisomy 13 And Trisomy 18
Publisher
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American Journal Of Medical Genetics Part C: Seminars In Medical Genetics
Date
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2016
Subject
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End-of-life Decision Making; Palliative Care; Perinatal Hospice; Perinatal Palliative Care; Prenatal Diagnosis; Trisomy 13; Trisomy 18
Creator
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Janvier A
Description
An account of the resource
Trisomy 13 and 18 are life-limiting conditions for which a palliative approach is frequently recommended. The objective of this study was to examine parental goals/decisions, the length of life of their child and factors associated with survival. Parents of children who lived with trisomy 13 or 18 that were part of English-speaking social networks were invited to participate in a questionnaire study. Participants answered questions about their hopes/goals, decisions regarding neonatal interventions, and the duration of their children's lives. The participants were 332 parents who answered questions about their 272 children (87% response rate based on site visits; 67% on invitations sent). When parents were asked about their hope after the diagnosis, the main themes invoked by parents were the following: meet their child alive (80% of parents with a prenatal diagnosis), spend some time as a family (72%), bring their child home (52%), and give their child a good life (66%). Parents wanted to give them a chance, but also reported their fears were medical complexity, pain and/or life in the hospital (61%). Healthcare providers recommended comfort care at birth to all parents. Life-sustaining interventions "as for any other child" was chosen as a plan of care by 25% of parents. Of the 216 children with full trisomy, 69% were discharged home after birth and 40% lived >1 y. The presence of a prenatal diagnosis was the strongest independent factor negatively associated with longevity: 36% of children with a prenatal diagnosis lived <24 hr and 47% were discharged home compared to 1% and 87%, respectively for children with a postnatal diagnosis (P < 0.01). Male gender, low-birth weight, and cardiac and/or cerebral anomaly were also associated with decreased survival (P < 0.05). After a prenatal diagnosis, palliative care at birth consisted of limited interventions, whereas after a postnatal diagnosis (median age of 6 days) it consisted of various interventions, including oxygen, ventilation, tube feeding and intravenous fluids, complicating the analysis. In conclusion, the goals of parents of children with trisomy 13 or 18 were to meet their child, be discharged home and be a family. Having a postnatal diagnosis was the independent factor most associated with these goals. Children with a postnatal diagnosis were treated "as any other children" until the diagnosis, which may give them a survival advantage, independent of palliative care. Rigorous transparency regarding specific interventions and outcomes may help personalize care for these children.
Identifier
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DOI: 10.1002/ajmg.c.31526
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).
2016
American Journal of Medical Genetics Part C: Seminars in Medical Genetics
August 2016 List
End-of-life Decision Making
Janvier A
Palliative Care
Perinatal Hospice
Perinatal Palliative Care
Prenatal Diagnosis
Trisomy 13
Trisomy 18