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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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September 2020 List
Text
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September 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.06.035" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.06.035</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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"I Could Never Prepare for Something Like the Death of My Own Child": Parental Perspectives on Preparedness at End of Life for Children With Complex Chronic Conditions
Publisher
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Journal of Pain and Symptom Management
Date
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2020
Subject
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beareavement; children; chronic disease; disability; end of life; palliative care
Creator
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Bogetz J F; Revette A; Rosenberg A R; DeCourcey D
Description
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Context: Children with complex chronic conditions (CCCs) have high morbidity and mortality. While these children often receive palliative care services, little is known about parental preparedness for their child's end of life (EOL). Objective(s): This study aimed to elucidate aspects important to preparedness at EOL among bereaved parents of children with CCCs. Method(s): In this cross-sectional study, parents of children who received care at Boston Children's Hospital and died between 2006 and 2015 completed 21 open-response items querying communication, decision-making, and EOL experiences as part of the Survey of Caring for Children with CCCs. Additional demographic data were extracted from the child's medical record. An iterative multistage thematic analysis of responses was utilized to identify key contexts, conditions, and themes pertaining to preparedness. Result(s): One hundred ten of 114 parents responded to open-ended items; 63% (n = 69) had children with congenital or central nervous system progressive primary conditions for a median of 7.5 years (IQR 0.8-18.1) before death. Seventy-one percent (n = 78/110) had palliative care involvement and 65% (n = 69/106) completed advance care planning. Parents described preparedness as a complex concept that extended beyond "readiness" for their child's death. Three domains emerged that contributed to parents' lack of preparedness: 1) chronic illness experiences; 2) pretense of preparedness; and 3) circumstances and emotions surrounding their child's death. Conclusion(s): Most bereaved parents of children with CCCs described feeling unprepared for their child's EOL, despite palliative care and advance care planning, suggesting preparedness is a nuanced concept beyond "readiness." More research is needed to identify supportive elements among parents facing their child's EOL. Copyright © 2020 American Academy of Hospice and Palliative Medicine
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.06.035" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.06.035</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).
2020
beareavement
Bogetz J F
Children
Chronic Disease
DeCourcey D
Disability
End Of Life
Journal of Pain and Symptom Management
Palliative Care
Revette A
Rosenberg A R
September 2020 List
-
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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April 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.
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April 2021 List
URL Address
<a href="http://doi.org/10.1017/s1478951521000225" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/s1478951521000225</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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Navigating the Terrain of Moral Distress: Experiences of Pediatric End of Life Care and Bereavement during COVID-19
Publisher
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Palliative & Supportive Care
Date
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2021
Subject
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End of life; Pediatric palliative care; Moral Distress; COVID-19; beareavement
Creator
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Wiener L; Rosenberg AR; Pennarola B; Fry A; Weaver MS
Description
An account of the resource
Objective: Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers’ moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC). Method: The Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs. Results: A total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents’ depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic. Significance of results: The COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.
Identifier
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<a href="http://doi.org/10.1017/s1478951521000225" target="_blank" rel="noreferrer noopener">10.1017/s1478951521000225</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).
2021
April 2021 List
beareavement
COVID-19
End Of Life
Fry A
Moral Distress
Palliative & Supportive Care
Pediatric Palliative Care
Pennarola B
Rosenberg AR
Weaver MS
Wiener L