1
40
3
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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 2016 List
URL Address
<a href="https://doi.org/10.1016/j.jpainsymman.2016.10.359">https://doi.org/10.1016/j.jpainsymman.2016.10.359</a>
Dublin Core
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Title
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Empowering Bereaved Parents Through the Development of a Comprehensive Bereavement Program
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
2016
Subject
The topic of the resource
Grief; Palliative Care; Bereavement; Pediatrics; Hospice Care
Creator
An entity primarily responsible for making the resource
Snaman JM; Kaye EC; Levine DR; Cochran B; Wilcox R; Sparrow CK; Noyes N; Clark L; Avery W; Baker JN
Description
An account of the resource
Parents who experience the loss of a child have unique and valuable insights into the grief journey and can help health care providers identify key components intrinsic to the development, implementation, and maintenance of a comprehensive bereavement program. The bereavement program at St. Jude Children's Research Hospital was developed by pediatric palliative care experts in collaboration with bereaved parents to standardize and improve the institutional support provided to families around and after the death of a child. This article describes the components of a parent-derived bereavement program and presents early results on the effects of specific program components. The program, under the leadership of the bereavement coordinator, includes clinical and supportive interventions offered throughout the grief journey, parent-created bereavement support materials, and opportunities for parents and families to participate in research, quality improvement initiatives and educational interventions. Parents report that services and interventions provided through the bereavement program are beneficial to families after the death of their child. In addition, both health care providers and bereaved parents report that participation in educational interventions positively impacts their experiences as clinicians and parents, respectively. The innovative nature of this parent-driven, comprehensive bereavement program may serve as a paradigm for the development of bereavement programs in the fields of pediatrics, palliative oncology and hospice and palliative medicine.
Identifier
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<a href="https://doi.org/10.1016/j.jpainsymman.2016.10.359">10.1016/j.jpainsymman.2016.10.359</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).
2016
Avery W
Baker JN
Bereavement
Clark L
Cochran B
Grief
Hospice Care
Journal of Pain and Symptom Management
Kaye EC
Levine DR
March 2016 List
Noyes N
Palliative Care
Pediatrics
Snaman JM
Sparrow CK
Wilcox R
-
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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2018 Oncology 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
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.01.021" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1016/j.jpainsymman.2018.01.021</a>
Dublin Core
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Title
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Predictors of Late Palliative Care Referral in Children with Cancer
Publisher
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Journal of Pain and Symptom Management
Date
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2018
Subject
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Child; Hematologic Neoplasms; Referral and Consultation; Palliative Care; pediatric oncology; Palliative care; early integration; Only Child; consultation; palliative oncology; timing
Creator
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Kaye EC; Jerkins J; Gushue CA; DeMarsh S; Sykes A; Lu Z; Snaman JM; Blazin L; Johnson LM; Levine DR; Morrison RR; Baker JN
Description
An account of the resource
CONTEXT: Early integration of palliative care (PC) in the management of children with high-risk cancer is widely endorsed by patients, families, clinicians, and national organizations. However, optimal timing for PC consultation is not standardized, and variables that influence timing of PC integration for children with cancer remain unknown. OBJECTIVES: To investigate associations between demographic, disease, treatment, and end-of-life attributes and timing of PC consultation for children with high-risk cancer enrolled on a PC service. METHODS: A comprehensive standardized tool was used to abstract data from the medical records of 321 patients treated at a large academic pediatric cancer who died between 2011 and 2015. RESULTS: Gender, race, ethnicity, enrollment on a phase I protocol, number of high-acuity hospitalizations, and receipt of cardiopulmonary resuscitation were not associated with timing of PC involvement. Patients with hematologic malignancy, those who received cancer-directed therapy during the last month of life, and those with advance directives documented </=1 week prior to death had higher odds of late PC referral (malignancy: OR 3.24, p=0.001; therapy: OR 4.65, p<0.001; directive: OR 4.81, p<0.0001). Patients who received hospice services had lower odds of late PC referral <30 days prior to death (OR 0.31, p<0.001). CONCLUSIONS: Hematologic malignancy, cancer-directed therapy at the end of life, and delayed advance directives documentation are associated with late PC involvement in children who died with cancer. Identification of these variables affords opportunities to study targeted interventions to enhance access to earlier PC resources and services for children with high-risk cancer and their families.
Identifier
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<a href="http://doi.org/%2010.1016/j.jpainsymman.2018.01.021" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.01.021</a>
2018
Baker JN
Blazin L
Child
Consultation
DeMarsh S
early integration
Gushue CA
Hematologic Neoplasms
Jerkins J
Johnson LM
Journal of Pain and Symptom Management
Kaye EC
Levine DR
Lu Z
Morrison RR
Oncology 2018 List
Only Child
Palliative Care
palliative oncology
Pediatric Oncology
Referral And Consultation
Snaman JM
Sykes A
timing
-
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
2018 Oncology 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
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.26895" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1002/pbc.26895</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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Illness and end-of-life experiences of children with cancer who receive palliative care
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
hospice; Child; Palliative Care; death; Life Change Events; artificial ventilation; personal experience; palliative therapy; major clinical study; retrospective study; childhood cancer; hospital patient; Only Child; cohort analysis; cost effectiveness analysis; human; article; child; female; male; controlled study; quality of life; hospitalization; resuscitation; intensive care unit; invasive procedure; experimental therapy; cancer susceptibility; cancer center; data extraction; phase 1 clinical trial
Creator
An entity primarily responsible for making the resource
Kaye EC; Gushue CA; DeMarsh S; Jerkins J; Sykes A; Lu Z; Snaman JM; Blazin L; Johnson LM; Levine DR; Morrison RR; Baker JN
Description
An account of the resource
Background: The field of pediatric palliative oncology is newly emerging. Little is known about the characteristics and illness experiences of children with cancer who receive palliative care (PC). Methods: A retrospective cohort study of 321 pediatric oncology patients enrolled in PC who died between 2011 and 2015 was conducted at a large academic pediatric cancer center using a comprehensive standardized data extraction tool. Results: The majority of pediatric palliative oncology patients received experimental therapy (79.4%), with 40.5% enrolled on a phase I trial. Approximately one-third received cancer-directed therapy during the last month of life (35.5%). More than half had at least one intensive care unit hospitalization (51.4%), with this subset demonstrating considerable exposure to mechanical ventilation (44.8%), invasive procedures (20%), and cardiopulmonary resuscitation (12.1%). Of the 122 patients who died in the hospital, 44.3% died in the intensive care unit. Patients with late PC involvement occurring less than 30 days before death had higher odds of dying in the intensive care unit over the home/hospice setting compared to those with earlier PC involvement (OR: 4.7, 95% CI: 2.47-8.97, P < 0.0001). Conclusions: Children with cancer who receive PC experience a high burden of intensive treatments and often die in inpatient intensive care settings. Delayed PC involvement is associated with increased odds of dying in the intensive care unit. Prospective investigation of early PC involvement in children with high-risk cancer is needed to better understand potential impacts on cost-effectiveness, quality of life, and delivery of goal concordant care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/%2010.1002/pbc.26895" target="_blank" rel="noreferrer noopener">10.1002/pbc.26895</a>
2018
Article
Artificial Ventilation
Baker JN
Blazin L
cancer center
cancer susceptibility
Child
Childhood Cancer
Cohort Analysis
Controlled Study
Cost Effectiveness Analysis
data extraction
Death
DeMarsh S
Experimental Therapy
Female
Gushue CA
Hospice
Hospital Patient
Hospitalization
Human
Intensive Care Unit
invasive procedure
Jerkins J
Johnson LM
Kaye EC
Levine DR
Life Change Events
Lu Z
Major Clinical Study
Male
Morrison RR
Oncology 2018 List
Only Child
Palliative Care
Palliative Therapy
Pediatric Blood and Cancer
Personal Experience
phase 1 clinical trial
Quality Of Life
Resuscitation
Retrospective Study
Snaman JM
Sykes A