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Text
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<a href="http://doi.org/10.1001/jamapediatrics.2013.943" target="_blank" rel="noreferrer">http://doi.org/10.1001/jamapediatrics.2013.943</a>
Dublin Core
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Title
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Family-centered advance care planning for teens with cancer
Publisher
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Jama Pediatrics
Date
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2013
Subject
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ICU Decision Making
Creator
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Lyon ME; Jacobs S; Briggs L; Cheng YI; Wang J
Identifier
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<a href="http://doi.org/10.1001/jamapediatrics.2013.943" target="_blank" rel="noreferrer">10.1001/jamapediatrics.2013.943</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).
Type
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Journal Article
Description
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IMPORTANCE Advance care planning (ACP) prepares patients and their families for future health care decisions; however, the needs of adolescent oncology patients for participation in ACP have not been well studied. OBJECTIVE To examine the efficacy of family-centered ACP. DESIGN AND SETTING Two-group randomized controlled trial in a pediatric oncology program. PARTICIPANTS Sixty adolescents aged 14 to 21 years with cancer and their surrogates or families were enrolled in the study between January 17, 2011, and March 29, 2012. INTERVENTION Thirty dyads received 3- to 60-minute sessions 1 week apart. Intervention dyads completed (1) the Lyon Family-Centered ACP Survey, (2) the Respecting Choices interview, and (3) Five Wishes. Control subjects received standard care plus information. MAIN OUTCOME MEASURES Statement of treatment preferences and Decisional Conflict Scale score. RESULTS The mean age of the adolescents was 16 years; 36 (60%) were male, 30 (50%) white, 26 (43%) black, and 4 (7%) Asian. Diagnoses were as follows: leukemia (14 patients [47%]), brain tumor (8 [27%]), solid tumor (6 [20%]), and lymphoma (2 [7%]). Significantly increased congruence was observed for intervention dyads compared with controls for 4 of the 6 disease-specific scenarios; for example, for situation 2 ("treatment would extend my life by not more than 2 to 3 months"), intervention dyads demonstrated higher congruence (kappa = 0.660; P < .001) vs control dyads (kappa = -0.0636; P = .70). Intervention adolescents (100%) wanted their families to do what is best at the time, whereas fewer control adolescents (62%) gave families this leeway. Intervention adolescents were significantly better informed about end-of-life decisions (t = 2.93; effect size, 0.961; 95% CI, 0.742-1.180; P = .007). Intervention families were more likely to concur on limiting treatments than controls. An ethnic difference was found in only one situation. CONCLUSIONS Advance care planning enabled families to understand and honor their adolescents' wishes. Intervention dyads were more likely than controls to limit treatments. Underserved African American families were willing to participate.
2013
Backlog
Briggs L
Cheng YI
ICU Decision Making
Jacobs S
JAMA Pediatrics
Journal Article
Lyon ME
Wang J
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Text
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URL Address
<a href="http://doi.org/10.1002/pbc.25358" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.25358</a>
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Title
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Adolescent end of life preferences and congruence with their parents' preferences: results of a survey of adolescents with cancer
Publisher
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Pediatric Blood & Cancer
Date
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2015
Creator
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Jacobs S; Perez J; Cheng YI; Sill A; Wang J; Lyon ME
Description
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BACKGROUND: Little is known about how well family members accurately represent adolescents when making EOL decisions on their behalf. This study reports on surveys given to adolescents with cancer and their parents as part of a larger study facilitating advanced care discussions, as well as the results of a survey for health care providers. PROCEDURE: Trained facilitators administered surveys orally to adolescents and families in the intervention arm of the FAmily CEntered Advance Care Planning (ACP) for Teens with Cancer (FACE-TC) study. In addition, a post-hoc survey was sent to oncology providers. RESULTS: Seventeen adolescent/family dyads completed this survey. Seventy five percent of adolescents believed it was appropriate to discuss EOL decisions early and only 12% were not comfortable discussing death. Most preferred to be at home if dying. There were substantial areas of congruence between adolescents and their surrogates, but lower agreement on the importance of dying a natural death, dying at home and "wanting to know if I were dying." Among providers, 83% felt their patients' participation in the study was helpful to the patients and 78% felt it was helpful to them as providers. CONCLUSIONS: Adolescents with cancer were comfortable discussing EOL, and the majority preferred to talk about EOL issues before they are facing EOL. There were substantive areas of agreement between adolescents and their surrogates, but important facets of adolescents' EOL wishes were not known by their families, reinforcing the importance of eliciting individual preferences and engaging dyads so parents can understand their children's wishes.
2015-04
Identifier
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<a href="http://doi.org/10.1002/pbc.25358" target="_blank" rel="noreferrer">10.1002/pbc.25358</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).
Type
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Journal Article
2015
Backlog
Cheng YI
Jacobs S
Journal Article
Lyon ME
Pediatric Blood & Cancer
Perez J
Sill A
Wang J
-
Dublin Core
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Title
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February 2018 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
February 2018 List
URL Address
<a href="http://doi.org/10.1097/NCC.0000000000000576" target="_blank" rel="noreferrer">http://doi.org/10.1097/NCC.0000000000000576</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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Surprised by Benefit in Pediatric Palliative Care Research
Publisher
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Cancer Nursing
Date
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2018
Subject
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Palliative Care
Creator
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Weaver MS; Bell CJ; Diver JL; Jacobs S; Lyon ME; Mooney-Doyle K; Newman AR; Slutsman J; Hinds PS
Identifier
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<a href="http://doi.org/10.1097/NCC.0000000000000576" target="_blank" rel="noreferrer">10.1097/NCC.0000000000000576</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).
2018
Bell CJ
Cancer Nursing
Diver JL
February 2018 List
Hinds PS
Jacobs S
Lyon ME
Mooney-Doyle K
Newman AR
Palliative Care
Slutsman J
Weaver MS