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Dublin Core
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February 2022 List
Text
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February 2022 List
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<a href="http://doi.org/10.1186/s12904-021-00884-2" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-021-00884-2</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/.
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Assessing the quality of deliberative stakeholder consultations involving allied health professionals in pediatric palliative care and hematology/oncology in Canada
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BMC Palliative Care
Date
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2021
Subject
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Allied Health Personnel; Brain Neoplasms; Child; deliberative democracy; Hematology; Palliative Care; pediatric oncology; quality assessment; Referral and Consultation; stakeholder consultation
Creator
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Rahimzadeh V; Longo C; Gagnon J; Fernandez C; Bartlett G
Description
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BACKGROUND: In this paper we assess the quality of six deliberative stakeholder consultations regarding the implementation of a precision diagnostic for life-threatening pediatric brain tumors. Decision makers who base policy recommendations on the outputs of consultative exercises can presuppose that all deliberants are well informed of the policy issue, that participation in the deliberative process was fair, and that overcoming implementation barriers will necessarily result in practice change. Additional evidence is therefore needed to substantiate the informational quality of the deliberation, measure the equality of participation and study the effects on stakeholder reasoning to appropriately guide uptake of proposed recommendation(s). METHODS: Using the DeVries framework for assessing the deliberative quality, we analyzed data from 44 post-consultation evaluation surveys completed by pediatric oncology and palliative care teams at two tertiary pediatric healthcare centers in Canada. We also conducted turn-taking and word-contribution analyses from the text transcriptions of each deliberation to assess equality of participation using descriptive statistics. RESULTS: Deliberants agreed the quality of the deliberative process was fair (median ratings ranging from 9-10 out of 10) and the opportunities to receive expert information and discuss with others about the implementation of a new LDT were helpful (9.5 out of 10). While the session improved understanding of the implementation barriers and opportunities, it had marginal effects on deliberants' reasoning about whether LDTs would change their own clinical practice (3-10 out of 10). Participation was proportionate in at least four of the six deliberations, where no deliberant took more than 20% of total turns and contributed equal to, or less than 20% of total words. CONCLUSION: The quality assessment we performed demonstrates high informational value and perceived fairness of two deliberative stakeholder consultations involving pediatric palliative care and oncology teams in Canada. Quality assessments can reveal how the process of deliberation unfolds, whether deliberative outputs are the result of equitable participation among deliberants and what, if any, stakeholder voices may be missing. Such assessments should be routinely reported as a condition of methodological rigor and trustworthiness of deliberative stakeholder engagement research.
Identifier
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<a href="http://doi.org/10.1186/s12904-021-00884-2" target="_blank" rel="noreferrer noopener">10.1186/s12904-021-00884-2</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).
2021
Allied Health Personnel
Bartlett G
BMC Palliative Care
Brain Neoplasms
Child
deliberative democracy
February 2022 List
Fernandez C
Gagnon J
Hematology
Longo C
Palliative Care
Pediatric Oncology
quality assessment
Rahimzadeh V
Referral And Consultation
stakeholder consultation
-
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/.
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PedPalASCNet Member Publications
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A collection of relevant articles published by one or more of PedPalASCNet's members
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
July 2017 List
Notes
<p>Rahimzadeh, Vasiliki<br/>Bartlett, Gillian<br/>Longo, Cristina<br/>Crimi, Laura<br/>Macdonald, Mary Ellen<br/>Jabado, Nada<br/>Ells, Carolyn<br/>Canadian Institutes of Health Research/Canada<br/>Journal Article<br/>Research Support, Non-U.S. Gov't<br/>England<br/>BMC Palliat Care. 2015 Oct 16;14:50. doi: 10.1186/s12904-015-0048-5.</p>
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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Promoting An Ethic Of Engagement In Pediatric Palliative Care Research
Publisher
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Bmc Palliative Care
Date
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2015
Subject
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Research; Humans; Palliative Care/methods; Patient Participation/methods; Pediatric Nursing/methods; Quality Of Life
Creator
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Rahimzadeh V; Bartlett G; Longo C; Crimi L; Macdonald ME; Jabado N; Ells C
Description
An account of the resource
BACKGROUND: This paper defends the ethical and empirical significance of direct engagement with terminally ill children and adolescents in PPC research on health-related quality of life. Clinical trials and other forms of health research have resulted in tremendous progress for improving clinical outcomes among children and adolescents diagnosed with a life-threatening illness. Less attention has been paid, however, to engaging this patient population directly in studies aimed at optimizing health-related quality of life in PPC. Though not restricted to care at the end of life, PPC--and by extension PPC research--is in part dependent on recognizing the social complexities of death and dying and where health-related quality of life is a fundamental element. To explore these complexities in depth requires partnership with terminally ill children and adolescents, and acknowledgement of their active social and moral agency in research. DISCUSSION: Principles of pediatric research ethics, theoretical tenets of the "new sociology of the child(hood)," and human rights codified in the United Nations Convention on the Rights of the Child (UNCRC) underpin the position that a more engagement-centered approach is needed in PPC research. The ethics, sociologies and human rights of engagement will each be discussed as they relate to research with terminally ill children and adolescents in PPC. Qualitative method(ologies) presented in this paper, such as deliberative stakeholder consultations and phenomenology of practice can serve as meaningful vehicles for achieving i) participation among terminally ill children and adolescents; ii) evidence-bases for PPC best practices; and iii) fulfillment of research ethics principles. CONCLUSION: PPC research based on direct engagement with PPC patients better reflects their unique expertise and social epistemologies of terminal illness. Such an approach to research would strengthen both the ethical and methodological soundness of HRQoL inquiry in PPC.
Identifier
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10.1186/s12904-015-0048-5
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).
2015
Bartlett G
BMC Palliative Care
Crimi L
Ells C
Humans
Jabado N
July 2017 List
Longo C
Macdonald ME
Palliative Care/methods
Patient Participation/methods
Pediatric Nursing/methods
Quality Of Life
Rahimzadeh V
Research