1
40
5
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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
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URL Address
<a href="http://doi.org/10.1007/s11912-004-0073-7" target="_blank" rel="noreferrer">http://doi.org/10.1007/s11912-004-0073-7</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
Issues and challenges in palliative care for children with cancer
Publisher
An entity responsible for making the resource available
Current Pain and Headache Reports
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
PedPal Lit; Adolescent Bioethics Child Health Care Costs Humans Neoplasms/; and the family. The way in which the care is delivered; and the place in which that care is given are not carved into a simple protocol. Quality of life is an important concept that is often overlooked. Educational initiatives for patients; complications Pain/; etiology; Families; health-care providers; methods Reimbursement Mechanisms Terminal Care%X Although the majority of children with cancer are cured of their illness; the child; the services provided; therapy Palliative Care/economics/ethics/
Creator
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Friedman DL; Hilden JM; Powaski K
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s11912-004-0073-7" target="_blank" rel="noreferrer">10.1007/s11912-004-0073-7</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
Description
An account of the resource
2005
2005
Adolescent Bioethics Child Health Care Costs Humans Neoplasms/
and the family. The way in which the care is delivered
and the place in which that care is given are not carved into a simple protocol. Quality of life is an important concept that is often overlooked. Educational initiatives for patients
Backlog
complications Pain/
Current Pain and Headache Reports
etiology
Families
Friedman DL
health-care providers
Hilden JM
Journal Article
methods Reimbursement Mechanisms Terminal Care%X Although the majority of children with cancer are cured of their illness
PedPal Lit
Powaski K
the child
the services provided
therapy Palliative Care/economics/ethics/
-
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/10.1200/JCO.2008.16.1562" target="_blank" rel="noreferrer">http://doi.org/10.1200/JCO.2008.16.1562</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
Availability and use of palliative care and end-of-life services for pediatric oncology patients
Publisher
An entity responsible for making the resource available
Journal Of Clinical Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
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Child; Female; Humans; Male; Questionnaires; North America; Palliative Care/utilization; Neoplasms/therapy; Pediatrics/methods; Terminal Care/utilization
Creator
An entity primarily responsible for making the resource
Johnston DL; Nagel K; Friedman DL; Meza JL; Hurwitz CA; Friebert S
Description
An account of the resource
PURPOSE: Palliative care prevents or relieves the symptoms caused by life-threatening medical conditions. Previous surveys have shown both underuse and lack of availability of these services for children with cancer throughout North America. We sought to investigate the current practices and resources surrounding palliative and end-of-life care among participating institutions of the Children's Oncology Group (COG). METHODS: A survey regarding practices and resources was developed by the COG palliative care subcommittee and was sent to all 232 institutions to complete for the calendar year 2005. RESULTS: The survey was completed by 81% of the institutions. Per institution, there were a mean of 64.6 newly diagnosed patients and 17.7 patients experiencing relapse. A palliative care team was available in 58% of institutions, a pain service in 90%, a hospice in 60%, a psychosocial support team in 80%, and a bereavement program in 59%. Complementary and alternative medicine was available in 39% of institutions and in 95% of the COG institution's community. Most services, even when available, were not well used by patients. CONCLUSION: Despite the well-established benefit of pediatric palliative care, it is only offered in 58% of COG institutions caring for children with cancer. In an era where the benefit of palliative care has been clearly established, this number should approach 100%. Efforts should be directed toward understanding barriers to provision of such services, so that they are available and well used at all childhood cancer centers.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1200/JCO.2008.16.1562" target="_blank" rel="noreferrer">10.1200/JCO.2008.16.1562</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
2008
Backlog
Child
Female
Friebert S
Friedman DL
Humans
Hurwitz CA
Johnston DL
Journal Article
Journal Of Clinical Oncology
Male
Meza JL
Nagel K
Neoplasms/therapy
North America
Palliative Care/utilization
Pediatrics/methods
Questionnaires
Terminal Care/utilization
-
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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2022 Special Edition 3 - 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
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1177/10499091221100809" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/10499091221100809</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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Effects of a Web-Based Pediatric Oncology Legacy Intervention on the Coping of Children With Cancer
Publisher
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American Journal of Hospice and Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Creator
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Cho E; Dietrich MS; Friedman DL; Gilmer MJ; Gerhardt CA; Given BA; Hendricks-Ferguson VL; Hinds PS; Akard TF
Description
An account of the resource
BACKGROUND: Recurrent or refractory cancer often results in substantial and extensive physical, emotional, psychosocial, and spiritual burdens for children and their families. However, the therapeutic benefits of legacy interventions in children with recurrent or refractory cancer have been examined only recently, with limited attention to specific effects on children's coping abilities. OBJECTIVE: The purpose of this study was to determine the effects of a digital storytelling-legacy intervention on the adaptive coping of children with recurrent or refractory cancer. METHODS: This study used a 2-arm randomized, waitlist-controlled trial design. A total of 150 children with recurrent or refractory cancer and their parents were recruited via Facebook advertisements. RESULTS: The analysis sample included 92 dyads (35-intervention group, 57-control group). The legacy intervention showed small and statistically nonsignificant effects on primary-control and disengagement coping strategies among children with recurrent or refractory cancer. CONCLUSIONS: Legacy interventions using readily accessible digital storytelling have the potential to enhance the adaptive coping skills among children with recurrent or refractory cancer. Further research should determine how to enhance interventions tailored to this population to optimize the benefits.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/10499091221100809" target="_blank" rel="noreferrer noopener">10.1177/10499091221100809</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).
2022
2022 Special Edition 3 - Oncology List
Akard TF
American Journal of Hospice and Palliative Medicine
children with cancer
Cho E
Coping
Dietrich MS
digital storytelling
Friedman DL
Gerhardt CA
Gilmer MJ
Given BA
Hendricks-Ferguson VL
Hinds PS
Intervention
legacy
Nursing
Palliative Care
Pediatric
-
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
2021 Special Edition 2 - Oncology
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
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1089/jpm.2020.0139" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2020.0139</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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Randomized Clinical Trial of a Legacy Intervention for Quality of Life in Children with Advanced Cancer
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Oncology
Creator
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Akard TF; Dietrich MS; Friedman DL; Wray S; Gerhardt CA; Hendricks-Ferguson V; Hinds PS; Rhoten B; Gilmer MJ
Description
An account of the resource
Background: Legacy-making (actions/behaviors aimed at being remembered) may be a significant component for quality of life (QOL) during advanced illness and end of life. Although legacy interventions have been tested in adults, the impact of legacy activities on QOL for children has yet to be clearly defined. Objective: This study examined the impact of our newly developed web-based legacy intervention on dimensions of QOL among children (7-17 years old) with advanced cancer. Design: This single-site randomized clinical trial (RCT) used a two-group waitlist control design. The legacy intervention guided children to create digital storyboards by directing them to answer legacy questions about themselves (personal characteristics, things they like to do, and connectedness with others) and upload photographs, video, and music. Setting/Subjects: Facebook advertisements recruited children (ages 7-17) with relapsed/refractory cancer and their parents from the United States. Child-parent dyads (Nā=ā150) were randomized to the intervention or usual care group, and 97 dyads were included for analysis. Measurements: Children and parents completed the PedsQL Cancer Module preintervention (T1) and post-intervention (T2). Results: Although not statistically significant, legacy-making demonstrated small effects in child procedural anxiety and perceived physical appearance (Cohen's d 0.35-0.28) compared to the wait-list control group. Conclusions: This study contributes important discoveries, including support for the feasibility of a RCT web-based legacy intervention for children with advanced cancer. We did not find convincing evidence supporting the hypothesis that legacy-making improved child dimensions of QOL across time. Overall, this is a null study that warrants discussion on possible reasons for limited findings. Future legacy intervention research is needed using qualitative and quantitative methods, as well as child and parent reports, to determine how such services may improve dimensions of QOL for pediatric palliative care populations. ClinicalTrials.gov number NCT04059393.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2020.0139" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0139</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
2021 Special Edition - Oncology
Akard TF
Dietrich MS
Friedman DL
Gerhardt CA
Gilmer MJ
Hendricks-Ferguson V
Hinds PS
Journal of Palliative Medicine
Oncology
Rhoten B
Wray S
-
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
2021 Special Edition 2 - Oncology
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
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1080/09699260.2021.1898077" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/09699260.2021.1898077</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
Facebook Recruitment for Children with Advanced Cancer and Their Parents: Lessons from a Web-based Pediatric Palliative Intervention Study
Publisher
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Progress in Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Oncology
Creator
An entity primarily responsible for making the resource
Cho E; Gilmer MJ; Friedman DL; Hendricks-Ferguson VL; Hinds PS; Akard TF
Description
An account of the resource
Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can help address these recruitment challenges for pediatric palliative care clinical trials. This study (a) describes Facebook recruitment procedures targeting children with cancer and their parents for a pediatric palliative intervention randomized clinical trial, (b) reports recruitment results, and (c) discusses successful strategies to recruit pediatric populations via Facebook advertisements. Researchers used Facebook advertisements to recruit children with advanced cancer (aged 7 to 17 years) for a web-based legacy intervention. Between years 2015 and 2018, our research team enrolled 150 child-parent dyads (N= 300) to participate in the web-based legacy program. Results suggest that Facebook advertisements can be a successful tool to access and recruit pediatric populations with life-threatening conditions. Further research is needed to determine how innovative social-media recruitment strategies could be used in other populations of patients with serious illnesses and their caregivers to further advance the science in palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/09699260.2021.1898077" target="_blank" rel="noreferrer noopener">10.1080/09699260.2021.1898077</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
2021 Special Edition - Oncology
Akard TF
Cho E
Friedman DL
Gilmer MJ
Hendricks-Ferguson VL
Hinds PS
Oncology
Progress In Palliative Care