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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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Special Edition #2 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
Special Edition #2
URL Address
<a href="http://doi.org/10.1542/peds.2021-052054" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2021-052054</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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Parents as Advocates for Pediatric Palliative Care
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Advocacy; Palliative care; Parents; Pediatrics
Creator
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Lord BT; Morrison W; Goldstein RD; Feudtner C
Description
An account of the resource
Caring for a child with a serious or life-limiting illness presents many challenges for families and health care providers. Through that experience (and, many times, as it ends), parents are compelled to find and make meaning from their ultimate loss and the many losses along the way. In this Advocacy Case Study, we describe the experiences that led a bereaved mother to seek to harness the insights from her own family's loss to help support other families facing the challenges and complexities of a child's serious illness. Her family initially established a family foundation to advocate for palliative care. She later partnered with her family's general pediatrician and the American Academy of Pediatrics to educate providers and bring parent voices to health care provider discussions. This work eventually led to the development of the Courageous Parents Network, a nonprofit focused on making these parent and provider voices widely available to families and providers through a Web-based collection of videos, blogs, podcasts, and printable guides. Through these insights, the organization addresses feelings of isolation, anxiety, and grief. In addition, these voices illustrate the power and benefits of the growing acceptance of pediatric palliative care practices. Important lessons learned through these efforts include: (1) the power of stories for validation, healing, and understanding; (2) opportunity to extend the reach of pediatric palliative care through provider education and skill-building; (3) critical importance of the parent-provider advocacy collaboration; and (4) necessity of market testing and continuous improvement.
Identifier
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<a href="http://doi.org/10.1542/peds.2021-052054" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-052054</a>
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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).
2021
2022 Special Edition 2 - Parent Perspectives
Advocacy
Feudtner C
Goldstein RD
Lord BT
Morrison W
Palliative Care
Parents
Pediatrics
-
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
November 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
November 2018 List
URL Address
<a href="http://doi.org/10.7196/sajog.1224" target="_blank" rel="noreferrer noopener">http://doi.org/10.7196/sajog.1224</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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Bereaved mothers' attitudes regarding autopsy of their stillborn baby
Publisher
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South African journal of obstetrics and gynaecology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Creator
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Human M;Goldstein RD;Groenewald CA;Kinney HC;Odendaal HJ
Description
An account of the resource
Background: Here we present additional information from the Safe Passage Study, where the effect of alcohol exposure during pregnancy on sudden infant death syndrome and stillbirth was investigated. Objective: To explore bereaved mothers' attitudes toward obtaining an autopsy on their stillborn baby, and the future implications of consenting or non-consenting to autopsy in retrospect. Methods: Demographic data was obtained by a questionnaire. A largely qualitative mixed-methods approach was used to meet the aims of the study, using an exploratory and descriptive research design to provide a detailed description of maternal attitudes. A semi-structured questionnaire based on information from literature and reflections on practice was administered during individual interviews. Results: We interviewed 25 women who had had a recent stillbirth. The time interval between the time of consenting to autopsy and completing this study ranged from 6 to 18 months. Most participants reported that autopsy results provided peace of mind and helped alleviate their feelings of blame. Participants who were unable to comprehend the results reported negative reactions to receiving autopsy results. The majority of participants were of the opinion that they benefited from consenting to autopsy. Conclusion: Autopsy and the disclosure of its results generally contribute positively to coping following stillbirth.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.7196/sajog.1224" target="_blank" rel="noreferrer noopener">10.7196/sajog.1224</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).
2017
Goldstein RD
Groenewald CA
Human M
Kinney HC
November 2018 List
Odendaal HJ
South African journal of obstetrics and gynaecology
-
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/10.1016/j.pcl.2014.04.009" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pcl.2014.04.009</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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Interdisciplinary Care: Using Your Team
Publisher
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Pediatric Clinics Of North America
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
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Children and youth with special health care needs; Continuity of care; Interdisciplinary; Medical home
Creator
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Ogelby M; Goldstein RD
Description
An account of the resource
The interdisciplinary approach is a cornerstone of a well-functioning pediatric palliative care team. These teams are most often available as an inpatient consultation service, are composed of professionals representing multiple disciplines, and are used during the illness course of a child with life-threatening and chronic complex conditions, especially during challenging health care decision-making near end of life. This article reviews the current structure of the palliative care team, explores opportunities for inclusion of other vital team members, and proactively identifies the challenges that may occur when involving more providers in a child's and family's care.
2014-08
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pcl.2014.04.009" target="_blank" rel="noreferrer">10.1016/j.pcl.2014.04.009</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
2014
Backlog
Children and youth with special health care needs
Continuity of care
Goldstein RD
Interdisciplinary
Journal Article
Medical home
Ogelby M
Pediatric Clinics of North America
-
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/10.1016/j.jpainsymman.2013.01.004" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2013.01.004</a>
<a href="http://www.sciencedirect.com/science/article/pii/S0885392413001188" target="_blank" rel="noreferrer">http://www.sciencedirect.com/science/article/pii/S0885392413001188</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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Regional Anesthesia Approaches to Pain Management in Pediatric Palliative Care: A Review of Current Knowledge
Publisher
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Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
adolescent; Child; Palliative Care; Pain Management; Nerve Block; Palliative Care; neuraxial blockade; regional anesthesia
Creator
An entity primarily responsible for making the resource
Rork JF; Berde CB; Goldstein RD
Description
An account of the resource
Context Although systemic analgesic therapies are the mainstay of pain treatment in pediatric palliative care, there are cases where they fail to adequately relieve symptoms or produce side effects that undermine effectiveness. Regional anesthesia may be considered as a potential therapy for these patients. Objectives To review the literature on regional techniques in pediatric patients with life-limiting and chronic conditions, including pain from tumor infiltration, chest pain in advanced pulmonary disease, chronic abdominal pain, phantom limb pain, and spasticity and dystonia. Where relevant, the authors' clinical experiences are included. Methods References were identified by searches of PubMed from 1980 until June 2012 with related terms. Results Case reports and case series were identified for each condition. Regional anesthesia techniques performed included central neuraxial infusions, peripheral nerve and plexus blocks or infusions, neurolytic blocks, and implanted intrathecal ports and pumps for baclofen, opioids, local anesthetics, and other adjuvants. The reports described positive contributions to the management of moderate-to-severe pain. Clinical context for these techniques frequently included the failure of systemic treatments and/or intolerable medication side effects. Complications varied according to the procedure and the underlying patient pathology; however, these risks were often acceptable when the potential benefits were consistent with the overall goals of care. Conclusion The present medical literature on regional anesthesia techniques in children receiving palliative care is limited to case reports and case series. Based on this evidence, recommendations must be provisional. Careful thought and discussion with pain management specialists are encouraged when pain symptoms are inadequately managed or the treatments produce deleterious side effects.
2013-12
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2013.01.004" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2013.01.004</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
2013
Adolescent
Backlog
Berde CB
Child
Goldstein RD
Journal Article
Journal of Pain and Symptom Management
Nerve Block
neuraxial blockade
Pain Management
Palliative Care
regional anesthesia
Rork JF