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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
A name given to the resource
2020 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 2020 List
URL Address
<a href="http://doi.org/10.1002/pbc.27993" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.27993</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
Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents
Publisher
An entity responsible for making the resource available
Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
newborn; social support; child; human; adult; female; major clinical study; male; retrospective study; article; priority journal; aged; Bereavement; adolescent; terminal care; quality of life; emotion; Parent; psychologist; social worker; content analysis; interpersonal communication; quantitative analysis; time of death; infant; caregiver; pediatric patient; nurse; support group; thematic analysis; psycho-oncology; open ended questionnaire; childhood cancer/dm [Disease Management]; pediatric oncologist; health care need; social media; worker
Creator
An entity primarily responsible for making the resource
Wiener L; Tager J; Mack J; Battles H; Bedoya S Z; Gerhardt C A
Description
An account of the resource
Background: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.27993" target="_blank" rel="noreferrer noopener">10.1002/pbc.27993</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
Adolescent
Adult
Aged
Article
Battles H
Bedoya S Z
Bereavement
Caregiver
Child
childhood cancer/dm [Disease Management]
Content Analysis
Emotion
Female
Gerhardt C A
health care need
Human
Infant
Interpersonal Communication
Mack J
Major Clinical Study
Male
Newborn
Nurse
Oncology 2020 List
open ended questionnaire
Parent
Pediatric Blood and Cancer
pediatric oncologist
pediatric patient
Priority Journal
Psycho-Oncology
Psychologist
Quality Of Life
quantitative analysis
Retrospective Study
social media
Social Support
Social Worker
support group
Tager J
Terminal Care
Thematic Analysis
time of death
Wiener L
worker
-
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
2019 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 2019 List
URL Address
<a href="http://doi.org/10.1177/1043454219836963" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1043454219836963</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
Participation in Online Research Examining End-of-Life Experiences: Is It Beneficial, Burdensome, or Both for Parents Bereaved by Childhood Cancer?
Publisher
An entity responsible for making the resource available
Journal of Pediatric Oncology Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
benefit; bereavement; burden; childhood cancer; end of life
Creator
An entity primarily responsible for making the resource
Tager J; Battles H; Bedoya S Z; Gerhardt C A; Young-Saleme T; Wiener L
Description
An account of the resource
It is important for the health care community to understand the impact of a child’s death on parent functioning. Yet involving bereaved parents in research that enquires about such a stressful time in their life can potentially bring harm to them. The current study examines the perceived benefit and burden of parents participating in a survey exploring their perceptions of their child’s end-of-life (EoL) and bereavement experiences. Parents whose child died from cancer or complications of cancer treatment were invited to complete a survey developed by pediatric psychosocial oncology professionals with input from bereaved parent advocates through a closed social media (Facebook) group. One hundred seventy-eight parents of children aged 0 to 37 years at death (median age 12 years) participated. More than three quarters of parents reported at least “a little benefit” and half reported at least “a little burden” associated with participation. Less burden was perceived by younger and female parents, parents of younger children, those who had felt prepared to meet their children’s emotional needs at EoL, and those not using bereavement services at the time of the survey. With the increasing use of social media as a source for bereaved parents to receive and provide emotional support, it is important for clinicians and researchers to understand the perceived benefits and risks of participating in research about EoL experiences via online recruitment. Our findings suggest that the benefit and burden of online research participation may vary for bereaved parents, but further research is necessary to replicate the findings and explore ways to optimize the use of this approach.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1043454219836963" target="_blank" rel="noreferrer noopener">10.1177/1043454219836963</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
Battles H
Bedoya S Z
benefit
Bereavement
burden
Childhood Cancer
End Of Life
Gerhardt C A
Journal Of Pediatric Oncology Nursing
Oncology 2019 List
Tager J
Wiener L
Young-Saleme T
-
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
2019 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 2019 List
URL Address
<a href="http://doi.org/10.1002/pbc.27771" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.27771</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
Utilization of palliative care consultations in pediatric oncology phase I clinical trials
Publisher
An entity responsible for making the resource available
Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
palliative care; pediatric oncology; phase I trial; quality of life; symptom management
Creator
An entity primarily responsible for making the resource
Cuviello A; Boss R; Shah N; Battles H; Beri A; Wiener L
Description
An account of the resource
Pediatric phase I clinical oncology trials represent a unique cohort of patients who have not responded to standard therapies and remain highly vulnerable to treatment toxicity and/or disease burden. Incorporating a palliative care consultation into the care plan for those with relapsed/refractory cancer where chance of cure is limited is generally recommended. A retrospective chart review of pediatric phase I trials revealed that palliative care was consulted in <20% of patients, most often for symptom management. Efforts to increase the use of palliative services in this population may enhance quality of life for children and families enrolled in phase I studies.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.27771" target="_blank" rel="noreferrer noopener">10.1002/pbc.27771</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
Battles H
Beri A
Boss R
Cuviello A
Oncology 2019 List
Palliative Care
Pediatric Blood and Cancer
Pediatric Oncology
phase I trial
Quality Of Life
Shah N
Symptom Management
Wiener L
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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
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.27455" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1002/pbc.27455</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
Courageous conversations: Advance care planning and family communication
Publisher
An entity responsible for making the resource available
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
follow up; cooperation; conference abstract; human; controlled study; adult; young adult; advance care planning; conversation; anxiety assessment; anxiety disorder; social media
Creator
An entity primarily responsible for making the resource
Wiener L; Zadeh BS; Battles H; Leonard S; Fasciano K; Heath C; Lyon M; Donovan KA;De Arruda Colli MNF; Pao M
Description
An account of the resource
Background/Objectives: Discussing end-of-life (EoL) care is very challenging for adolescents and young adults (AYA) living with cancer. While many helpful documents exist to facilitate EoL conversations with adults, few resources exist to aid AYA in communicating their preferences for their care while they are living and how they want to be remembered after their death. Research completed at the National Cancer Institute, NIH LED to the development of an advance care planning (ACP) guide, Voicing My CHOiCESTM (VMC). The objectives of this study are to determine 1) the perceived helpfulness of VMC; 2) whether further revisions are needed, and 3) whether engaging in ACP using VMC is associated with reduced anxiety and/or improved communication about ACP with family. Design/Methods: AYA ages 18-39 (NCI definition of AYA) complete a baseline assessment of anxiety and communication. Participants review VMC and rate the helpfulness, stressfulness and changes needed for each page and complete 3 pages of the document. Assessment of anxiety and communication is repeated 1 month later. Results: Ninety AYA participated at baseline; 73 at follow up. Fifty-five percent had not previously discussed their wishes/preferences for EoL care with their family at baseline. Of those, 50% shared what they wrote in VMC at follow-up. For the 45% that had an initial conversation at baseline, 76% discussed what was written in the VMC. Among those who did not have the conversation, specific barriers were identified. Over 90% reported the VMC questions to be somewhat helpful/helpful/very helpful. Several changes were suggested, including remembrance on social media. Both general anxiety and anxiety around end of life planning decreased significantly (p<.01) between baseline and follow up. Conclusions: Introducing a developmentally appropriate ACP guide can facilitate EoL discussions with AYA family members. Our data suggests such discussions can lead to reduced generalized anxiety and anxiety specific to EoL planning.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
2018
Adult
Advance Care Planning
anxiety assessment
anxiety disorder
Battles H
conference abstract
Controlled Study
Conversation
Cooperation
De Arruda Colli MNF
Donovan KA
Fasciano K
Follow Up
Heath C
Human
Leonard S
Lyon M
Oncology 2018 List
Pao M
Pediatric Blood and Cancer
social media
Wiener L
Young Adult
Zadeh BS