1
40
2
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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
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/10.1136/archdischild-2017-313480" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2017-313480</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
Ethics and patient and public involvement with children and young people
Publisher
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Archives of Disease in Childhood - Education and Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Humans; Adolescent; Child; Female; Male; Middle Aged; Adult; Guidelines as Topic; Patient Participation/px [Psychology]; United Kingdom; Research Personnel/px [Psychology]; Health Services Research/es [Ethics]; Health Services Research/st [Standards]; Patient Participation/sn [Statistics & Numerical Data]; Research Design/st [Standards]; Research Personnel/es [Ethics]; Research Personnel/st [Standards]
Creator
An entity primarily responsible for making the resource
Mitchell S J; Slowther A; Coad J; Akhtar S; Hyde E; Khan D; Dale J
Description
An account of the resource
Patient and public involvement (PPI) is important both in research and in quality improvement activities related to healthcare services . While PPI activities do not require formal ethical approval, they can raise a number of ethical concerns, through the introduction of complex technical medical concepts, challenging language or sensitive subject areas. There is very little published literature to guide ethical practice in this area. We have been conducting PPI with children and young people throughout a research study in paediatric palliative care. PPI started during the application process and continued to guide and shape the research as it progressed. Ethical issues can arise at any time in PPI work. Although many can be predicted and planned for, the nature of PPI means that researchers can be presented with ideas and concepts they had not previously considered, requiring reflexivity and a reactive approach. This paper describes how we considered and addressed the potential ethical issues of PPI within our research. The approach that emerged provides a framework that can be adapted to a range of contexts and will be of immediate relevance to researchers and clinicians who are conducting PPI to inform their work. Copyright © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2019. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2017-313480" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-313480</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
Adolescent
Adult
Akhtar S
Archives of Disease in Childhood - Education and Practice
August 2020 List
Child
Coad J
Dale J
Female
Guidelines As Topic
Health Services Research/es [Ethics]
Health Services Research/st [Standards]
Humans
Hyde E
Khan D
Male
Middle Aged
Mitchell S J
Patient Participation/px [Psychology]
Patient Participation/sn [Statistics & Numerical Data]
Research Design/st [Standards]
Research Personnel/es [Ethics]
Research Personnel/px [Psychology]
Research Personnel/st [Standards]
Slowther A
United Kingdom
-
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
Backlog
URL Address
<a href="http://doi.org/10.1177/1049909108322294" target="_blank" rel="noreferrer">http://doi.org/10.1177/1049909108322294</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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The use of pediatric advance directives: a tool for palliative care physicians.
Publisher
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The American Journal Of Hospice & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Child; Humans; United States; Personal Autonomy; decision making; DNAR; Palliative Care/es [Ethics]; Palliative Care/og [Organization & Administration]; Advance Care Planning/es [Ethics]; Right to Die/lj [Legislation & Jurisprudence]; Advance Care Planning/og [Organization & Administration]; Palliative Care/px [Psychology]; Child Advocacy; Pediatrics/og [Organization & Administration]; Child Advocacy/es [Ethics]; Child Advocacy/lj [Legislation & Jurisprudence]; Child Advocacy/px [Psychology]; Minors/lj [Legislation & Jurisprudence]; Minors/px [Psychology]; Parental Consent/es [Ethics]; Parental Consent/lj [Legislation & Jurisprudence]; Parental Consent/px [Psychology]; Patient Participation/lj [Legislation & Jurisprudence]; Patient Participation/px [Psychology]; Pediatrics/es [Ethics]; Right to Die/es [Ethics]
Creator
An entity primarily responsible for making the resource
Zinner SE
Description
An account of the resource
Although laws such as the Patient Self-Determination Act encourage individuals to address their end-of-life treatment preferences using advance directives, the wishes of children have traditionally been ignored or, perhaps even worse, overruled. Given that there is a substantial body of research indicating that children are capable of making mature decisions when faced with terminal illness, the author proposes granting minors, especially older minors, the right to participate in making end-of-life decisions. Children who complete advance directives benefit in multiple ways. Adopting this approach could benefit patients by demonstrating respect for patient autonomy and informing parents and providers that the minor may be ready to stop aggressive treatment.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909108322294" target="_blank" rel="noreferrer">10.1177/1049909108322294</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).
Type
The nature or genre of the resource
Journal Article
2008
Advance Care Planning/es [Ethics]
Advance Care Planning/og [Organization & Administration]
Backlog
Child
Child Advocacy
Child Advocacy/es [Ethics]
Child Advocacy/lj [Legislation & Jurisprudence]
Child Advocacy/px [Psychology]
Decision Making
DNAR
Humans
Journal Article
Minors/lj [legislation & Jurisprudence]
Minors/px [Psychology]
Palliative Care/es [Ethics]
Palliative Care/og [Organization & Administration]
Palliative Care/px [psychology]
Parental Consent/es [Ethics]
Parental Consent/lj [Legislation & Jurisprudence]
Parental Consent/px [Psychology]
Patient Participation/lj [Legislation & Jurisprudence]
Patient Participation/px [Psychology]
Pediatrics/es [Ethics]
Pediatrics/og [Organization & Administration]
Personal Autonomy
Right to Die/es [Ethics]
Right to Die/lj [Legislation & Jurisprudence]
The American Journal of Hospice & Palliative Care
United States
Zinner SE