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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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October 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
October List 2023
URL Address
<a href="http://doi.org/10.1136/medhum-2022-012507" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/medhum-2022-012507</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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Metaphors and decision making in parental blogs about their children with life-limiting diseases: who's afraid of the war metaphor?
Publisher
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Med Humanit
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Child; Decision Making; child health; War; linguistics; Blogging; Metaphor; metaphor; Metaphor; patient narratives
Creator
An entity primarily responsible for making the resource
Neefjes V
Description
An account of the resource
The use of metaphors aids understanding by allowing us to think of complex problems in terms of relatively simple and more concrete information. As such, metaphors shape thought and guide future action. While metaphors are known to play a role in medical treatment decision-making, the effect of particular metaphors is unknown.This paper explores the metaphors West-European parents use for their child suffering from a life-limiting condition by analysing 15 blogs from Dutch, German and English and Welsh parents. The analysis found that all parents use war metaphors to describe their child and their disease. Describing their child in war metaphors, for example, 'fighter', 'hero' or 'trooper' allows parents to express their pride in their child. To describe the familial situation parents use both 'life as a fight' and a 'time as space' metaphor. Time is conceptualised as a space to be filled with positive experiences to allow the child to live as full a life as possible. In medical treatment decisions, parents balance 'fighting the disease' against their child's ability to live a good life. No evidence was found that the use of war metaphors increase a tendency to treat when benefit is unlikely. Instead, parents primarily use war metaphors as a conduit to express their love for their child and to empower them to manage the familial situation.
Identifier
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<a href="http://doi.org/10.1136/medhum-2022-012507" target="_blank" rel="noreferrer noopener">10.1136/medhum-2022-012507</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
Blogging
Child
Child Health
Decision Making
Humans
Linguistics
Med Humanit
Metaphor
Neefjes V
October List 2044
patient narratives
War
-
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 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
August List 2023
URL Address
<a href="http://doi.org/10.1089/jpm.2022.0520" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2022.0520</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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Parental Ethical Decision Making and Implications for Advance Care Planning: A Systematic Review and Secondary Analysis of Qualitative Literature from England and Wales, Germany, and the Netherlands
Publisher
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Journal of Palliative Medicine
Date
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2023
Subject
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child; Decision Making; Germany; female; human; male; Netherlands; systematic review; review; advance care planning; Wales; ethics; care behavior; decision making; thematic analysis; qualitative research; theoretical study; Advance Care Planning; ethical decision making; England; law suit; secondary analysis; Wales; Netherlands; Germany
Creator
An entity primarily responsible for making the resource
Neefjes V
Description
An account of the resource
Background: Clinicians and parents are expected to make medical treatment decisions in the child's best interests. To reach their decisions, clinicians typically apply a principled approach outlined by Beauchamp and Childress. How parents make ethical decisions is an under-researched area. A possible model for parental decision making is the Ethics of Care (EoC) theory. Ethical decision making within this framework aims to preserve the caring relationship. What is right or wrong depends on the circumstances at the time. <br/>Objective(s): To identify the parental ethical values and determine whether parental decision making is consistent with EoC, a systematic review and secondary analysis of qualitative research from England and Wales, the Netherlands, and Germany was performed. As part of a larger project investigating conflicts between parents and clinicians about children's medical treatment, the choice of countries was determined by differences in litigation. <br/>Method(s): Eight databases were searched for articles published between 2010 and 2020 reporting on at least one medical treatment decision made by parents of a child with any life-limiting condition and analyzed using reflexive thematic analysis. Twelve included articles directly addressing advance care planning (ACP) were reanalyzed to investigate whether this specific decision parents are increasingly being asked to make is also consistent with EoC. <br/>Result(s): Forty-three articles were included. Parents use the same 6 ethical values which, consistent with EoC, are mostly in the context of their relationship with the child. All values contributed to the previously identified theme of "being a good parent/person." Analysis of parental decision making in ACP confirmed consistency with EoC. <br/>Conclusion(s): The parental decision-making process is consistent with EoC. That parental decisions aim to maintain the caring relationship and are dependent on the circumstances at the time has implications for parental decision making in ACP and should be reflected in future policies.
Identifier
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<a href="http://doi.org/10.1089/jpm.2022.0520" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0520</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
Advance Care Planning
August List 2040
care behavior
Child
Decision Making
England
Ethical Decision Making
Ethics
Female
Germany
Human
Journal of Palliative Medicine
law suit
Male
Neefjes V
Netherlands
Qualitative Research
Review
Secondary Analysis
Systematic Review
Thematic Analysis
theoretical study
Wales
-
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/10.1016/j.jpainsymman.2022.05.020" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2022.05.020</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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Polypharmacy in children and young people with life-limiting conditions from 2000-2015: a repeated cross-sectional study in England
Publisher
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Journal of pain and symptom management
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
child; pediatrics; England; chronic disease; female; male; adult; human; young adult; age; article; controlled study; major clinical study; nervous system; cross-sectional study; cohort analysis; observational study; prevalence; polypharmacy; congenital disorder
Creator
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Fraser LK; Gibson-Smith D; Jarvis S; Papworth A; Neefjes V; Hills M; Doran T; Taylor J
Description
An account of the resource
CONTEXT: Polypharmacy is often appropriate for children with life-limiting conditions but is associated with an increase in hospitalisations and inappropriate prescribing, and can affect the quality of life of children and their families as they manage complex medication schedules. Despite this, little is known about polypharmacy in this population. OBJECTIVE(S): To describe the prevalence and patterns of polypharmacy in children with a life-limiting condition in a nationally representative cohort in England. METHOD(S): Observational study of children (age 0-19 years) with a life-limiting condition in a national database from 2000 to 2015. Common definitions of polypharmacy were used to determine polypharmacy prevalence in each year based on unique medications and regular medications. Hierarchical regression analyses were used to explore factors associated with polypharmacy. RESULT(S): Data on 15,829 individuals were included. Each year 27-39% of children were prescribed >=5 unique medications and 8-12% were prescribed >=10.Children with a respiratory (OR 7.6, 95%CI 6.4-9.0), neurological (OR 2.8, 95%CI 2.4-3.2) or metabolic (OR 2.2, 95%CI 1.7-2.8) condition were more likely than those with a congenital condition to experience polypharmacy. Increasing age, being diagnosed with a LLC under 1 year of age, having >1 life-limiting or chronic condition or living in areas of higher deprivation were also associated with higher prevalence of polypharmacy. CONCLUSION(S): Children with life-limiting conditions have a high prevalence of polypharmacy and some children are at greater risk than others. More research is needed to understand and address the factors that lead to problematic polypharmacy in this population. Copyright © 2022. Published by Elsevier Inc.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.05.020" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.05.020</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
Adult
Age
Article
August 2022 List
Child
Chronic Disease
Cohort Analysis
congenital disorder
Controlled Study
Cross-sectional Study
Doran T
England
Female
Fraser LK
Gibson-Smith D
Hills M
Human
Jarvis S
Journal of Pain and Symptom Management
Major Clinical Study
Male
Neefjes V
Nervous System
Observational Study
Papworth A
Pediatrics
Polypharmacy
Prevalence
Taylor J
Young Adult