1
40
3
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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
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/10.1186/s12904-023-01326-x" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01326-x</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 NeoPACE study: study protocol for the development of a core outcome set for neonatal palliative care
Publisher
An entity responsible for making the resource available
BMC Palliative Care
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; adult; article; controlled study; human; male; newborn; palliative therapy; newborn death; perinatal death; terminal care; total quality management; systematic review; interview; newborn intensive care; health care personnel; therapy; Delphi study
Creator
An entity primarily responsible for making the resource
Gallagher K; Chant K; Mancini A; Bluebond-Langner M; Marlow N
Description
An account of the resource
Neonatal death is the leading category of death in children under the age of 5 in the UK. Many babies die following decisions between parents and the neonatal team; when a baby is critically unwell, with the support of healthcare professionals, parents may make the decision to stop active treatment and focus on ensuring their baby has a 'good' death. There is very little evidence to support the clinical application of neonatal palliative care and/or end-of-life care, resulting in variation in clinical provision between neonatal units. Developing core outcomes for neonatal palliative care would enable the development of measures of good practice and enhance our care of families. The aim of this study is to develop a core outcome set with associated tools for measuring neonatal palliative care. Method: This study has four phases: (1) identification of potential outcomes through systematic review and qualitative interviews with key stakeholders, including parents and healthcare professionals (2) an online Delphi process with key stakeholders to determine core outcomes (3) identification of outcome measures to support clinical application of outcome use (4) dissemination of the core outcome set for use across neonatal units in the UK. Key stakeholders include parents, healthcare professionals, and researchers with a background in neonatal palliative care. Discussion: Developing a core outcome set will standardise minimum reported outcomes for future research and quality improvement projects designed to determine the effectiveness of interventions and clinical care during neonatal palliative and/or end-of-life care. The core outcome set will provide healthcare professionals working in neonatal palliative and/or end-of-life support with an increased and consistent evidence base to enhance practice in this area. Trial registration: The study has been registered with the COMET initiative ( https://www.comet-initiative.org/Studies/Details/1470 ) and the systematic review is registered with the International Prospective Register of Systematic Reviews (PROSPERO) (CRD42023451068).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-023-01326-x" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01326-x</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
Adult
Article
Bluebond-Langner M
BMC Palliative Care
Chant K
Child
Controlled Study
Delphi Study
February List 2024
Gallagher K
Health Care Personnel
Human
Interview
Male
Mancini A
Marlow N
Newborn
Newborn Death
Newborn Intensive Care
Palliative Therapy
Perinatal Death
Systematic Review
Terminal Care
Therapy
Total Quality Management
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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
June 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
June 2022 List
URL Address
<a href="http://doi.org/10.1080/10410236.2022.2059800" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/10410236.2022.2059800</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
End-of-Life Decision Making Between Doctors and Parents in NICU: The Development and Assessment of a Conversation Analysis Coding Framework
Publisher
An entity responsible for making the resource available
Health Communication
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Conversation; Critically ill patient; Decision making; Disability; Doctors; Interrater reliability; Parents
Creator
An entity primarily responsible for making the resource
Shaw C; Connabeer K; Drew P; Gallagher K; Aladangady N; Marlow N
Description
An account of the resource
We report the development and assessment of a novel coding framework in the context of research into neonatal end-of-life decision making conversations. Data comprised 27 formal conversations between doctors and parents of critically ill babies, recorded in two neonatal intensive care units. The coding framework was developed from a qualitative analysis of the recordings using the method of conversation analysis (CA). Codes underpinned by our qualitative analysis had in the main moderate to strong agreement (inter-rater reliability) between coders; three codes had lower agreement reflecting the use of euphemisms for death and disability. Coding these interactions confirmed the significance of the doctors' talk in terms of parental involvement in decision-making, whilst highlighting areas warranting further qualitative analysis. This quantifiable representation provides a novel outcome based on evidence that is internal to the conversation rather than influenced by other factors related to the baby's care or outcome.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/10410236.2022.2059800" target="_blank" rel="noreferrer noopener">10.1080/10410236.2022.2059800</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
Aladangady N
April 2022 List
Connabeer K
Conversation
Critically Ill Patient
Decision Making
Disability
Doctors
Drew P
Gallagher K
Health Communication
interrater reliability
Marlow N
Parents
Shaw C
-
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
September 2016 List
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 Involvement In Neonatal Critical Care Decision-making.
Publisher
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Sociology Of Health & Illness
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Sociology; Life; Interrogatives; Consultation; Social Sciences; Biomedical; Decision Making; Shared Decision; Recommendations; Medical Authority; Communication; Conversation; End Of Life Care; Public; Public Environmental & Occupational Health; End; Resistance; Training; Cooperation; Communication; Palliative Care; Decision Making; Intensive Care; Participation; Ethics; Medicine; Physicians; Parents; Conversational Analysis; Decisions; Infant; Palliative Treatment; Parenting; Infants (newborn); Decision Making; Parent And Child; Analysis
Conversation Analysis; Decision-making; End Of Life; Ethics; Neonatal; Parental Involvement
Creator
An entity primarily responsible for making the resource
Shaw C; Stokoe E; Gallagher K; Aladangady N; Marlow N
Description
An account of the resource
The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care at the end of life. Thirty one families were recruited from a neonatal intensive care unit in England and their formal interactions with the doctor recorded. The conversations were transcribed and analysed using conversation analysis. Analysis focused on sequences in which decisions about the redirection of care were initiated and progressed. Two distinct communicative approaches to decision-making were used by doctors: 'making recommendations' and 'providing options'. Different trajectories for parental involvement in decision-making were afforded by each design, as well as differences in terms of the alignments, or conflicts, between doctors and parents. 'Making recommendations' led to misalignment and reduced opportunities for questions and collaboration; 'providing options' led to an aligned approach with opportunities for questions and fuller participation in the decision-making process. The findings are discussed in the context of clinical uncertainty, moral responsibility and the implications for medical communication training and guidance.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1111/1467-9566.12455
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).
2016
Aladangady N
Analysis
Biomedical
Communication
Consultation
Conversation
Conversation Analysis
Conversational Analysis
Cooperation
Decision Making
Decision-making
Decisions
End
End Of Life
End Of Life Care
Ethics
Gallagher K
Infant
Infants (newborn)
Intensive Care
Interrogatives
Life
Marlow N
Medical Authority
Medicine
Neonatal
Palliative Care
Palliative Treatment
Parent And Child
Parental Involvement
Parenting
Parents
Participation
Physicians
Public
Public Environmental & Occupational Health
Recommendations
Resistance
September 2016 List
Shared Decision
Shaw C
Social Sciences
Sociology
Sociology of Health & Illness
Stokoe E
Training