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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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2020 Oncology List
Text
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Oncology 2020 List
URL Address
<a href="http://doi.org/10.1002/pbc.28755" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.28755</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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Identification of adolescents and young adults' preferences and priorities for future cancer treatment using a novel decision-making tool
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Pediatric Blood and Cancer
Date
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2020
Subject
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pediatrics; adolescents; cancer; oncology; young adults; cancer treatment; decision-making tool
Creator
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Snaman J M; Helton G; Holder R L; Revette A; Baker J N; Wolfe J
Description
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Background: Adolescents and young adults (AYAs) with cancer receive high-intensity care and experience significant symptoms at the end of life. As novel cancer-directed therapies increase, AYAs with advanced cancer may face multiple treatment options, each with unique risk/benefit profiles. To augment the AYAs' voice in the decision-making process, we developed MyPref, an adaptive conjoint analysis-based tool. Procedure: We conducted a three-staged pilot study of MyPref utilizing an exploratory intervention mixed methods design. AYAs and their identified parent or trusted person (PTP) completed MyPref and received a summary of their preferences for nine treatment-related factors. Participants later engaged in semi-structured interviews to further explore their experience with MyPref. Responses to free text questions and interviews were analyzed using qualitative techniques. Result(s): Fifteen AYAs with advanced cancer and seven PTPs participated in the pilot. While most participants identified time until cancer grows, quality of life, and side effects to be the most important factors when considering a future treatment, preferences were highly varied. Notably, MyPref-calculated preferences differed from initial rank order, and participants indicated that calculated preferences were accurate in follow-up interviews. Conclusion(s): The MyPref-calculated preferences varied by individual and differed from initial rank ordering. Additionally, there was variability in how individuals defined and prioritized treatment-related factors. This novel tool may be a useful way to engage AYAs and their PTPs in discussions around preferences for treatment and prepare AYAs for future decision making. We plan to evaluate this tool longitudinally to evaluate the impact on actual treatment decisions. Copyright © 2020 Wiley Periodicals LLC
Identifier
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<a href="http://doi.org/10.1002/pbc.28755" target="_blank" rel="noreferrer noopener">10.1002/pbc.28755</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
Adolescents
Baker J N
Cancer
cancer treatment
decision-making tool
Helton G
Holder R L
Oncology
Oncology 2020 List
Pediatric Blood and Cancer
Pediatrics
Revette A
Snaman J M
Wolfe J
Young Adults
-
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
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
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
An account of the resource
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>
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
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