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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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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/10.1136/jme-2023-108912" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/jme-2023-108912</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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Navigating parental requests: considering the relational potential standard in paediatric end-of-life care in the paediatric intensive care unit
Publisher
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Journal of Medical Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; terminal care; article; human; palliative therapy; medical decision making; pediatrics; clinical article; school child; physician; pediatric intensive care unit; intensive care; medical ethics; adolescent; drug therapy; ethical dilemma; clinician; special situation for pharmacovigilance
Creator
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Kingsley J; Clark J; Lewis-Newby M; Dudzinski DM; Diekema D
Description
An account of the resource
Families and clinicians approaching a child's death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child's best interest, finding an optimal balance of benefit over harm, and sometimes addressing potential futility and moral distress. The best interest standard (BIS) is often marshalled by clinicians to help navigate these dilemmas and focuses on a clinician's primary ethical duty to the paediatric patient. This approach does not consider a clinician's potential duty to the patient's family. This paper argues that when a child is dying in the PICU, the physician has a duty to serve both the patient and the family, and that in some circumstances, the duty to serve the family becomes as important as that owed to the child. We detail the limitations of the BIS in paediatric EOL care and propose the relational potential standard as an additional ethical framework to guide our decisions.
Identifier
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<a href="http://doi.org/10.1136/jme-2023-108912" target="_blank" rel="noreferrer noopener">10.1136/jme-2023-108912</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
Adolescent
Article
Child
Clark J
Clinical Article
Clinician
Diekema D
Drug Therapy
Dudzinski DM
Ethical dilemma
February List 2024
Human
Intensive Care
Journal of Medical Ethics
Kingsley J
Lewis-Newby M
Medical Decision Making
Medical Ethics
Palliative Therapy
Pediatric Intensive Care Unit
Pediatrics
Physician
School Child
special situation for pharmacovigilance
Terminal 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
August 2022 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 2022 List
URL Address
<a href="http://doi.org/10.3390/children9050664" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children9050664</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
Documentation of Psychosocial Distress and Its Antecedents in Children with Rare or Life-Limiting Chronic Conditions
Publisher
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Children (Basel)
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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pediatrics; complex chronic conditions; rare diseases; psychosocial distress
Creator
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McCarthy SR; Golembiewski EH; Gravholt DL; Clark JE; Clark J; Fischer C; Mulholland H; Babcock K; Montori VM; Jones A
Description
An account of the resource
Children with rare or life-limiting chronic conditions and their families are at high risk of psychosocial distress. However, despite its impact on patient and family health and functioning, psychosocial distress and its antecedents may not routinely be captured in medical records. The purpose of this study was to characterize current medical record documentation practices around psychosocial distress among children with rare or life-limiting chronic conditions and their families. Medical records for patients with rare or life-limiting chronic conditions (n = 60) followed by a pediatric complex care program were reviewed. Study team members extracted both structured data elements (e.g., diagnoses, demographic information) and note narratives from the most recent visit with a clinician in the program. Psychosocial topics were analyzed using a mixed quantitative (i.e., frequency counts of topics) and qualitative approach. Topics related to psychosocial distress that were documented in notes included child and parent emotional problems, parent social support, sibling emotional or physical problems, family structure (e.g., whether parents were together), and financial concerns. However, 35% of notes lacked any mention of psychosocial concerns. Although examples of psychosocial concerns were included in some notes, none were present in over one-third of this sample. For both patients with rare or life-limiting chronic conditions and their caregivers, more active elicitation and standard documentation of psychosocial concerns may improve the ability of healthcare providers to identify and intervene on psychosocial concerns and their risk factors.
Identifier
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<a href="http://doi.org/10.3390/children9050664" target="_blank" rel="noreferrer noopener">10.3390/children9050664</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).
2022
August 2022 List
Babcock K
Children (Basel)
Clark J
Clark JE
Complex Chronic Conditions
Fischer C
Golembiewski EH
Gravholt DL
Jones A
McCarthy SR
Montori VM
Mulholland H
Pediatrics
psychosocial distress
Rare Diseases