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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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November 2022 List
Text
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Citation List Month
November 2022 List
URL Address
<a href="http://doi.org/10.1177/02692163221105599" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163221105599</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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Measuring Quality of Dying, Death and End-Of-Life Care for Children and Young People: A Scoping Review of Available Tools
Publisher
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Palliative Medicine
Date
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2022
Subject
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Hospice Care; Terminal Care; Adolescent; Child; Humans; Palliative Care; Quality of Life; Reproducibility of Results; Adolescent; Palliative Care; Quality of Death; Quality of Dying; Review; Terminal Care; Tools
Creator
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Mayland CR; Sunderland KA; Cooper M; Taylor P; Powell PA; Zeigler L; Cox V; Gilman C; Turner N; Flemming K; Fraser LK
Description
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BACKGROUND: The circumstances and care provided at the end of a child's life have a profound impact on family members. Although assessing experiences and outcomes during this time is challenging, healthcare professionals have a responsibility to ensure high quality of care is provided. AIM: To identify available tools which measure the quality of dying, death and end-of-life care for children and young people; describe the content, and data on validity and reliability of existing tools. DESIGN: Scoping review was conducted following the Arksey and O'Malley methodological framework. DATA SOURCES: Four electronic databases (MEDLINE, EMBASE, CINAHL and PsycINFO) and grey literature were searched for studies published in English (January 2000-June 2021). A review of reference lists and citation searching was also undertaken. Tools needed to include a focus on the 'dying' phase of illness (defined as the last month of life). RESULTS: From 2078 articles, a total of 18 studies, reporting on 11 tools were identified. All tools were completed by primary caregivers or healthcare professionals as 'proxy' assessments; all except one was undertaken after death. Question items about quality of life and preparation for death were found in all tools; items relating to cultural aspects of care, grief and financial costs were less common. Only 6/11 had undergone psychometric testing within a paediatric palliative care setting. CONCLUSIONS: Future research should include ways to adapt, refine and improve existing tools. Assessing their wider application in different clinical and cultural settings and conducting further psychometric assessment represent areas of focus.
Identifier
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<a href="http://doi.org/10.1177/02692163221105599" target="_blank" rel="noreferrer noopener">10.1177/02692163221105599</a>
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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).
Adolescent
Child
Palliative Care
Quality of Life
Terminal Care
2022
Cooper M
Cox V
Flemming K
Fraser LK
Gilman C
Hospice Care
Humans
Mayland CR
November 2022 List
Palliative Medicine
Powell PA
Quality Of Death
quality of dying
Reproducibility of Results
Review
Sunderland KA
Taylor P
tools
Turner N
Zeigler L
-
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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2018 Developing World 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
Developing World 2018 List
URL Address
<a href="http://doi.org/10.21037/apm.2018.04.02" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.21037/apm.2018.04.02</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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Outcome measurement in paediatric palliative care: lessons from the past and future developments
Publisher
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Annals of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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palliative care; paediatrics; outcomes; Patient reported outcome measures (PROMs); tools
Creator
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Downing J; Namisango E; Harding R
Identifier
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<a href="http://doi.org/10.21037/apm.2018.04.02" target="_blank" rel="noreferrer noopener">10.21037/apm.2018.04.02</a>
2018
Annals Of Palliative Medicine
Developing World 2018 List
Downing J
Harding R
Namisango E
Outcomes
Paediatrics
Palliative Care
Patient reported outcome measures (PROMs)
tools