1
40
3
-
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
October 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
September 2018 List
URL Address
<a href="http://doi.org/10.1016/j.chc.2018.05.011" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1016/j.chc.2018.05.011</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
Making Meaning After the Death of a Child
Publisher
An entity responsible for making the resource available
Child and Adolescent Psychiatric Clinics of North America
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
bereavement; death; medical education; palliative therapy; storytelling; voice; article; child; controlled study; empathy; female; human; mother; narrative; skill; student; videorecording
Creator
An entity primarily responsible for making the resource
Clancy S; Lord B
Description
An account of the resource
Two bereaved mothers recount how they made meaning after the deaths of their children, recounting how opportunities to tell their stories in medical settings enabled them to construct narratives that promoted resilience and a sense of control. Pediatric palliative care can be conceived as opening space for patients and guardians to tell their stories outside of the specifics of illness, so medical teams can work to accommodate families' values and goals, thereby initiating the process of meaning making. Viewing videos of parent stories enables medical trainees to enhance their communications skills, empathy, and compassion.Copyright © 2018 Elsevier Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.chc.2018.05.011" target="_blank" rel="noreferrer noopener">10.1016/j.chc.2018.05.011</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
Article
Bereavement
Child
Child And Adolescent Psychiatric Clinics Of North America
Clancy S
Controlled Study
Death
Empathy
Female
Human
Lord B
Medical Education
Mother
Narrative
Palliative Therapy
September 2018 List
Skill
Storytelling
Student
videorecording
Voice
-
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
December 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
December 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.007" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.08.007</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
Parent Perspective and Response to Challenges and Priorities for Pediatric Palliative Care Research
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
child; human; letter; palliative therapy
Creator
An entity primarily responsible for making the resource
Lord B
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.08.007</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).
2019
Child
December 2019 List
Human
Journal of Pain and Symptom Management
Letter
Lord B
Palliative Therapy
-
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
September 2020 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 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.07.024" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.07.024</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
What do parents value regarding pediatric palliative and hospice care in the home setting?
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
discrete choice experiment; home-based care; pediatric hospice care; pediatric palliative care
Creator
An entity primarily responsible for making the resource
Boyden J Y; Ersek M; Deatrick J A; Widger K; LaRagione G; Lord B; Feudtner C
Description
An account of the resource
CONTEXT: Children with life-shortening serious illnesses and medically complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most. OBJECTIVE: To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home. METHODS: Twenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains. RESULTS: Forty-seven parents participated. Overall, highest-rated domains included Physical Aspects of Care: Symptom Management, Psychological/EmotionalSupportfor the Child, and Care Coordination. Lowest-rated domains included Spiritual and Religious Aspects of Care and Cultural Aspects of Care. In exploratory analyses, parents who had other children rated the Psychological/Emotional Aspects of Care for the Sibling(s) domain significantly higher than parents who did not have other children (P=0.02). Furthermore, bereaved parents rated the CaregiverSupportat the End of Life domain significantly higher than parents who were currently caring for their child (P=0.04). No other significant differences in domain ratings were observed. CONCLUSIONS: Knowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2020.07.024" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.07.024</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).
2020
Boyden J Y
Deatrick J A
discrete choice experiment
Ersek M
Feudtner C
Home-based Care
Journal of Pain and Symptom Management
LaRagione G
Lord B
Pediatric Hospice Care
Pediatric Palliative Care
September 2020 List
Widger K