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Dublin Core
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Title
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Oncology
Text
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Citation List Month
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1097/ncc.0000000000000465" target="_blank" rel="noreferrer">http://doi.org/10.1097/ncc.0000000000000465</a>
Dublin Core
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Title
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Refinement of a Conceptual Model for Adolescent Readiness to Engage in End-of-Life Discussions
Publisher
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Cancer Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Creator
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Bell CJ; Zimet GD; Hinds PS; Broome ME; McDaniel AM; Mays RM; Champion VL
Description
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BACKGROUND: Adolescents living with incurable cancer require ongoing support to process grief, emotions, and information as disease progresses including treatment options (phase 1 clinical trials and/or hospice/palliative care). Little is known about how adolescents become ready for such discussions. OBJECTIVE: The purpose of this study was to explore the process of adolescent readiness for end-of-life preparedness discussions, generating a theoretical understanding for guiding clinical conversations when curative options are limited. METHODS: We explored 2 in-depth cases across time using case-study methodology. An a priori conceptual model based on current end-of-life research guided data collection and analysis. Multiple sources including in-depth adolescent interviews generated data collection on model constructs. Analysis followed a logical sequence establishing a chain of evidence linking raw data to study conclusions. Synthesis and data triangulation across cases and time led to theoretical generalizations. Initially, we proposed a linear process of readiness with 3 domains: a cognitive domain (awareness), an emotional domain (acceptance), and a behavioral domain (willingness), which preceded preparedness. RESULTS: Findings led to conceptual model refinement showing readiness is a dynamic internal process that interacts with preparedness. Current awareness context facilitates the type of preparedness discussions (cognitive or emotional). Furthermore, social constraint inhibits discussions. CONCLUSIONS: Data support theoretical understanding of the dynamism of readiness. Future research that validates adolescent conceptualization will ensure age-appropriate readiness representation. IMPLICATIONS FOR PRACTICE: Understanding the dynamic process of readiness for engaging in end-of-life preparedness provides clinician insight for guiding discussions that facilitate shared decision making and promote quality of life for adolescents and their families.
Identifier
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<a href="http://doi.org/10.1097/ncc.0000000000000465" target="_blank" rel="noreferrer">10.1097/ncc.0000000000000465</a>
Rights
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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).
2017
Bell CJ
Broome ME
Cancer Nursing
Champion VL
Hinds PS
Mays RM
McDaniel AM
Oncology 2017 List
Zimet GD
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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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February 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
February 2018 List
URL Address
<a href="http://doi.org/10.1097/NCC.0000000000000576" target="_blank" rel="noreferrer">http://doi.org/10.1097/NCC.0000000000000576</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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Surprised by Benefit in Pediatric Palliative Care Research
Publisher
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Cancer Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Palliative Care
Creator
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Weaver MS; Bell CJ; Diver JL; Jacobs S; Lyon ME; Mooney-Doyle K; Newman AR; Slutsman J; Hinds PS
Identifier
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<a href="http://doi.org/10.1097/NCC.0000000000000576" target="_blank" rel="noreferrer">10.1097/NCC.0000000000000576</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
Bell CJ
Cancer Nursing
Diver JL
February 2018 List
Hinds PS
Jacobs S
Lyon ME
Mooney-Doyle K
Newman AR
Palliative Care
Slutsman J
Weaver MS
-
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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May 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
May 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0483" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0483</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 Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review
Publisher
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Journal of Palliative Medicine
Date
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2019
Subject
The topic of the resource
pediatric palliative care; benefits and burdens; palliative care research
Creator
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Weaver MS; Mooney-Doyle K; Kelly KP; Montgomery K; Newman AR; Fortney CA; Bell CJ; Spruit JL; Kurtz U M; Wiener L; Schmidt CM; Madrigal VN; Hinds PS
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2018.0483" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0483</a>
Rights
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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).
Description
An account of the resource
OBJECTIVE: The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. BACKGROUND: Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens. METHODS: Systematic review followed PRISMA guidelines with prepared protocol registered as PROSPERO #CRD42018087304. MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and The Cochrane Library were searched (2000-2017). English-language studies depicting the benefits or burdens of palliative care or end-of-life research participation on either pediatric patients and/or their family members, clinicians, or study teams were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). RESULTS: Twenty-four studies met final inclusion criteria. The benefit or burden of palliative care research participation was reported for the child in 6 papers; siblings in 2; parents in 19; clinicians in 3; and researchers in 5 papers. Benefits were more heavily emphasized by patients and family members, whereas burdens were more prominently emphasized by researchers and clinicians. No paper utilized a validated benefit/burden scale. DISCUSSION: The lack of published exploration into the benefits and burdens of those asked to take part in pediatric palliative care research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and end-of-life research design and reporting.
2019
Bell CJ
benefits and burdens
Fortney CA
Hinds PS
Journal of Palliative Medicine
Kelly KP
Kurtz U M
Madrigal VN
May 2019 List
Montgomery K
Mooney-Doyle K
Newman AR
palliative care research
Pediatric Palliative Care
Schmidt CM
Spruit JL
Weaver MS
Wiener 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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September 2021 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
September 2021 List
URL Address
<a href="http://doi.org/10.31478/202108a" target="_blank" rel="noreferrer noopener">http://doi.org/10.31478/202108a</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 Road to Readiness: Guiding Families of Children and Adolescents with Serious Illness Toward Meaningful Advance Care Planning Discussions
Publisher
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NAM Perspectives
Date
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2021
Subject
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adolescents; Advance care planning; children; readiness; serious illness
Creator
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Wiener L; Bell CJ; Spruit JL; Weaver MS; Thompson AL
Description
An account of the resource
Seriously ill children, adolescents, and young adults (C-AYA) live with a heavy symptom burden, uncertain or poor prognoses, and evolving expectations of their disease course that require health care professionals (HCPs) to facilitate and maintain meaningful conversations across clinical settings. Caring for C-AYA with life-threatening illnesses is complex for family caregivers and HCPs. Among […]
Identifier
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<a href="http://doi.org/10.31478/202108a" target="_blank" rel="noreferrer noopener">10.31478/202108a</a>
Rights
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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).
2021
Adolescents
Advance Care Planning
Bell CJ
Children
NAM Perspectives
readiness
September 2021 List
Serious Illness
Spruit JL
Thompson AL
Weaver MS
Wiener 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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October 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
October 2022 List
URL Address
<a href="http://doi.org/10.1089/jpm.2022.0240">http://doi.org/10.1089/jpm.2022.0240</a>
Dublin Core
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Title
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Describing Pediatric Palliative Care Concepts to Patients and Families #442
Publisher
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Journal of Palliative Medicine
Date
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2022
Subject
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article; child; human; palliative; therapy
Creator
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Bell CJ
Description
An account of the resource
Pediatric palliative care teams provide an additional layer of continuity and support to children and families throughout the course of any serious illness. The mentioned concepts offer support to a child's primary medical team who play an instrumental role in educating patients and families about palliative care and fostering appropriate and timely integration of pediatric palliative care services. © Copyright 2022, Mary Ann Liebert, Inc., publishers 2022.
Identifier
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<a href="http://doi.org/10.1089/jpm.2022.0240">10.1089/jpm.2022.0240</a>
Rights
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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).
2022
Article
Bell CJ
Child
Human
Journal of Palliative Medicine
October 2022 List
Palliative
Therapy