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September 2020 List
Text
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September 2020 List
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<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
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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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March 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
March 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.318" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.318</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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Symptoms and Suffering at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions (S756)
Publisher
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Journal of Pain and Symptom Management
Date
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2020
Subject
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adult; central nervous system; child; chromosome; chronic disease; conference abstract; data analysis; dyspnea; female; human; major clinical study; male; medical technology; pain; prospective study; young adult
Creator
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Marcus K; Kao P C; Ma C; Wolfe J; DeCourcey D
Description
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Objectives: * Identify parent perceptions of suffering at end of life in children with life-threatening complex chronic conditions. * Describe factors associated with child suffering at end of life. Original Research Background: Research in children with cancer and cardiac disease has highlighted significant suffering at end of life (EOL). Children with other life-threatening complex chronic conditions (LT-CCC) comprise a growing proportion of patients, yet little is known about their EOL suffering. Research Objectives: To examine parent perspectives on EOL suffering among children with LT-CCC and factors associated with high child suffering in the final two days of life.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.318" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.318</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
Adult
Central Nervous System
Child
Chromosome
Chronic Disease
conference abstract
Data Analysis
DeCourcey D
Dyspnea
Female
Human
Journal of Pain and Symptom Management
Kao P C
Ma C
Major Clinical Study
Male
March 2020 List
Marcus K
Medical Technology
Pain
Prospective Study
Wolfe J
Young Adult