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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
A name given to the resource
March 2019 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 2019 List
URL Address
<a href="http://doi.org/10.1136/goshabs.46" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1136/goshabs.46</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
Challenges in receiving research ethics committee approval for studies involving children and young people with life-limiting conditions and life-threatening illnesses: Analysis of research ethics committee minutes and correspondence with principle investigators
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
documentation; scientist; cytochrome P450; endogenous compound; United Kingdom; conference abstract; human; child; peer review; attention; error; research ethics; writing; 9035-51-2 (cytochrome P450)
Creator
An entity primarily responsible for making the resource
Butler A E; Vincent K; Bluebond-Langner M
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/goshabs.46" target="_blank" rel="noreferrer noopener"> 10.1136/goshabs.46</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).
Description
An account of the resource
Background Research ethics committees (RECs) are identified as one of the biggest barriers to research with vulnerable populations, such as children and young people with life-limiting conditions or life-threatening illnesses (CYP with LLC/LTI). Despite this, REC concerns for research with this population and their correspondence with principle investigators during the research approval process remains unknown. The aim is to explore the challenges in receiving REC approval for studies involving CYP with LLC/LTIs, focusing on the primary concerns of the REC and the ways these are addressed by the research team. Methods Analysis of REC meeting minutes, REC decision letters, and researcher response letters were conducted for all studies involving CYP with LLC/LTIs reviewed in the United Kingdom between March 2011-2016. Results REC meeting minutes and decision letters were received for 77 studies, with 27 researcher response letters provided. Though most REC concerns were general, relating to participant information sheets, methodological issues, or formatting errors, a number of concerns specific to CYP with LLC/LTIs were also identified, such as the age of consent/ assent or the need to involve clinical teams in recruitment. Overall, RECs raised 279 concerns in their correspondence with investigators, most of which resulted in changes to research methods or documentation. Conclusions Research protocols involving CYP with LLC/LTIs usually require multiple changes before REC approval is given. Many of the main REC concerns, such as formatting issues or insufficient detail, can be easily resolved with attention to detail or peer review prior to submission. Others, such as recruitment methods or consent procedures, require more detailed consideration of study methods to ensure they appropriately consider the needs of CYP with LLC/LTIs. Understanding REC concerns may help researchers consider potential issues more thoroughly before submission, reducing the impact of RECs as a barrier and improving research quality overall.
2018
9035-51-2 (cytochrome P450)
Archives of Disease in Childhood
Attention
Bluebond-Langner M
Butler A E
Child
conference abstract
cytochrome P450
Documentation
Endogenous Compound
error
Human
March 2019 List
Peer Review
research ethics
Scientist
United Kingdom
Vincent K
writing
-
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
April 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
April 2018 List
URL Address
<a href="http://doi.org/10.1038/jp.2017.160" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/jp.2017.160</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
Parental assessment of comfort in newborns affected by lifelimiting conditions treated by a standardized neonatal comfort care program
Publisher
An entity responsible for making the resource available
Journal of Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
life expectancy; Infant; Newborn; health survey; newborn; health care quality; self report; parental attitude; prospective study; parental behavior; newborn care; child parent relation; health program; human; female; male; adult; article; clinical article; life limiting disease; patient comfort; physical disease; fluid intake; health care delivery; infant nutrition; kangaroo care; peer review; standardization
Creator
An entity primarily responsible for making the resource
Parravicini E; Daho M; Foe G; Steinwurtzel R; Byrne M
Description
An account of the resource
Objective:To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program.Study Design:Participants were parents (n=35 families) who elected comfort care for their newborns diagnosed with life-limiting conditions. Standardized comfort measures including family/infant bonding, warmth, nutrition/hydration and pain/discomfort management were provided to all infants. Parents consented to receive a questionnaire with quantitative response options and open-ended questions.Results:Forty-two questionnaires (26 from mothers and 16 from fathers) were collected and analyzed. Most parents reported that their child was treated with respect, in a caring, peaceful and non-invasive environment. To the question 'Do you think that overall your baby received comfort' mode response was 'always'.Conclusion:Parents of infants with life-limiting conditions perceive that their babies experience comfort as a result of the care provided by the standardized Neonatal Comfort Care Program.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1038/jp.2017.160" target="_blank" rel="noreferrer noopener">10.1038/jp.2017.160</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).
2018
Adult
April 2018 List
Article
Byrne M
Child Parent Relation
Clinical Article
Daho M
Female
fluid intake
Foe G
Health Care Delivery
Health Care Quality
health program
Health Survey
Human
Infant
Infant Nutrition
Journal Of Perinatology
kangaroo care
Life Expectancy
life limiting disease
Male
Newborn
Newborn Care
Parental Attitude
parental behavior
Parravicini E
Patient Comfort
Peer Review
physical disease
Prospective Study
Self Report
standardization
Steinwurtzel R
-
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/10.1177/0883073808331089" target="_blank" rel="noreferrer">http://doi.org/10.1177/0883073808331089</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
Success at publishing in biomedical journals: hints from a journal editor
Publisher
An entity responsible for making the resource available
Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Biomedical Research; Research; Authorship; Peer Review; Periodicals as Topic; Publishing; PubMed
Creator
An entity primarily responsible for making the resource
Brumback RA
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0883073808331089" target="_blank" rel="noreferrer">10.1177/0883073808331089</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
2009
Authorship
Backlog
Biomedical Research
Brumback RA
Journal Article
Journal of Child Neurology
Peer Review
Periodicals as Topic
Publishing
PubMed
Research
-
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/10.1177/0883073809340922" target="_blank" rel="noreferrer">http://doi.org/10.1177/0883073809340922</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
ABRV (or Abbrevobabble Revisited)
Publisher
An entity responsible for making the resource available
Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Interdisciplinary Communication; Language; Research/standards; Biomedical Research/standards; Peer Review; Abbreviations as Topic; Periodicals as Topic/standards
Creator
An entity primarily responsible for making the resource
Brumback RA
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0883073809340922" target="_blank" rel="noreferrer">10.1177/0883073809340922</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
2009
Abbreviations as Topic
Backlog
Biomedical Research/standards
Brumback RA
Interdisciplinary Communication
Journal Article
Journal of Child Neurology
Language
Peer Review
Periodicals as Topic/standards
Research/standards