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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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July 2023 List
Text
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Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.1016/j.jped.2023.04.002" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jped.2023.04.002</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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End-of-life care in Brazilian pediatric intensive care units: challenges and opportunities
Publisher
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The Journal of Pediatrics
Date
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2023
Subject
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Brazil; end-of life care; Intensive Care Units; pediatric; Terminal Care
Creator
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Rotta AT; Alibrahim O
Description
An account of the resource
Pediatric Critical Care Medicine has evolved drastically as a specialty since its inception more than five decades ago.1 Advances in technology and medical interventions have led to a substantial reduction in mortality rates, which are now in the single digits; an achievement once unfathomable in the early days of our specialty.1,2 However, with the high survival rates currently seen in pediatric intensive care units (PICUs), the focus of care has shifted from life preservation “at all cost” to greater consideration given towards end-of-life care (EOLC), when appropriate. In fact, over 50% of deaths in the PICU represent the endpoint of a predetermined EOLC strategy within the scope of palliative care.3,4 This shift has created a dilemma for pediatric intensivists, who must balance the benefits of technological interventions (what can be done) with the ethical and moral quandaries of providing quality care (what should be done) to terminally ill children. The use of technological equipment has become increasingly ordinary in patients with irreversible and chronic illnesses, leading to a reliance on artificial life-sustaining methods that can adversely affect the patient's quality of life, their loved ones, and the healthcare team. As counterpart to these contemporary care strategies, it is morally and ethically permissible – and most would reason that it is in fact one's responsibility – to recommend and facilitate discontinuation of life-sustaining measures when the distress brought about by treatment outweighs its benefit to the child.5 ...
Identifier
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<a href="http://doi.org/10.1016/j.jped.2023.04.002" target="_blank" rel="noreferrer noopener">10.1016/j.jped.2023.04.002</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
Alibrahim O
Brazil
end-of life care
Intensive Care Units
July List 2023
Pediatric
Rotta AT
Terminal Care
The Journal Of Pediatrics
-
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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2020 Oncology 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
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2020.5424" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamanetworkopen.2020.5424</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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Congruence Gaps between Adolescents with Cancer and Their Families Regarding Values, Goals, and Beliefs about End-of-Life Care
Publisher
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JAMA Network Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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pediatrics; adolescents; cancer; oncology; families; end-of life care
Creator
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Friebert S; Grossoehme D H; Baker J N; Needle J; Thompkins J D; Cheng Y I; Wang J; Lyon M E
Description
An account of the resource
Importance: Lack of pediatric advance care planning has been associated with poor communication, increased hospitalization, poor quality of life, and legal actions. Clinicians presume that families understand adolescents' treatment preferences for end-of-life care. Objective(s): To examine patient-reported end-of-life values and needs of adolescents with cancer and congruence with their families' understanding of these needs. Design, Setting, and Participant(s): This cross-sectional survey was conducted among adolescent-family dyads from July 16, 2016, to April 30, 2019, at 4 tertiary care pediatric US hospitals. Participants included 80 adolescent-family dyads (160 participants) within a larger study facilitating pediatric advance care planning. Adolescent eligibility criteria included being aged 14 to 21 years, English speaking, being diagnosed with cancer at any stage, and knowing their diagnosis. Family included legal guardians for minors or chosen surrogate decision-makers for those aged 18 years or older. Data analysis was performed from April 2019 to November 2019. Exposure: Session 1 of the 3-session Family Centered Pediatric Advance Care Planning for Teens With Cancer intervention. Main Outcomes and Measures: The main outcome was congruence between adolescents with cancer and their families regarding adolescents' values, goals, and beliefs about end-of-life care. Prevalence-adjusted and bias-adjusted kappa (PABAK) values were used to measure congruence on the Lyon Advance Care Planning Survey-Revised (Patient and Surrogate versions). Result(s): A total of 80 adolescent-family dyads (160 participants) were randomized to the intervention group in the original trial. Among the adolescents, 44 (55.0%) were female and 60 (75.0%) were white, with a mean (SD) age of 16.9 (1.8) years. Among family members, 66 (82.5%) were female and 65 (81.3%) were white, with a mean (SD) age of 45.3 (8.3) years. Family members' understanding of their adolescent's beliefs about the best time bring up end-of-life decisions was poor: 86% of adolescents wanted early timing (before getting sick, while healthy, when first diagnosed, when first sick from a life-threatening illness, or all of the above), but only 39% of families knew this (PABAK, 0.18). Families' understanding of what was important to their adolescents when dealing with their own dying was excellent for wanting honest answers from their physician (PABAK, 0.95) and understanding treatment choices (PABAK, 0.95) but poor for dying a natural death (PABAK, 0.18) and being off machines that extend life, if dying (PABAK, 0). Conclusions and Relevance: Many families had a poor understanding of their adolescent's values regarding their own end-of-life care, such as when to initiate end-of-life conversations and preference for being off machines that extend life. Pediatric advance care planning could minimize these misunderstandings with the potential for a substantial impact on quality of care. Copyright © 2020 American Medical Association. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jamanetworkopen.2020.5424" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2020.5424</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).
2020
Adolescents
Baker J N
Cancer
Cheng Y I
end-of life care
Families
Friebert S
Grossoehme D H
JAMA Network Open
Lyon M E
Needle J
Oncology
Oncology 2020 List
Pediatrics
Thompkins J D
Wang J
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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
A name given to the resource
December 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
December 2020 List
URL Address
<a href="http://doi.org/10.1177/1049909120965949" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909120965949</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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Caring for Dying Infants: A Systematic Review of Healthcare Providers' Perspectives of Neonatal Palliative Care
Publisher
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American Journal of Hospice and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
attitudes; end-of life care; neonatal; palliative
Creator
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Beltran SJ; Hamel MN
Description
An account of the resource
OBJECTIVES: The palliative and hospice care movement has expanded significantly in the United States since the 1960s. Neonatal end of life care, in particular, is a developing area of practice requiring healthcare providers to support terminally ill newborns and their families, to minimize suffering at the end of the neonate's life. This paper seeks to systematically summarize healthcare providers' perspectives related to end of life, in order to identify needs and inform future directions. METHODS: Informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, we systematically reviewed the literature discussing healthcare provider perspectives of neonatal end of life care ranging from year 2009 to 2020. To be included in the review, articles had to explicitly focus on perspectives of healthcare providers toward neonatal end of life care, be published in academic peer-reviewed sources, and focus on care in the United States. RESULTS: Thirty-three articles were identified meeting all inclusion criteria. The literature covers, broadly, provider personal attitudes, experiences delivering care, practice approaches and barriers, and education and training needs. The experiences of physicians, physician assistants, nurse practitioners, and nurses are highlighted, while less is discussed of other providers involved with this work (e.g., social work, physical therapy). CONCLUSION: Future research should focus on developing and testing interventions aimed at training and supporting healthcare providers working with neonates at end of life, as well as addressing barriers to the development and implementation of neonatal palliative teams and guidelines across institutions.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909120965949" target="_blank" rel="noreferrer noopener">10.1177/1049909120965949</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).
2020
American Journal Of Hospice And Palliative Care
Attitudes
Beltran SJ
December 2020 List
end-of life care
Hamel MN
Neonatal
Palliative