1
40
1
-
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
May 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
May 2020 List
URL Address
<a href="http://doi.org/10.1177/0269216319874689" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319874689</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
Medical and end-of-life decision making in adolescents' pre-heart transplant: A descriptive pilot study
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
adolescent; adult; Advance Care Planning; article; attention; child; clinical article; cross-sectional study; decision making; female; heart graft; human; male; patient participation; pilot study; prognosis; school child; young adult
Creator
An entity primarily responsible for making the resource
Cousino M K; Miller V A; Smith C; Uzark K; Lowery R; Rottach N; Blume E D; Schumacher K R
Description
An account of the resource
BACKGROUND: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and end-of-life decision-making preferences. AIM: (1) To examine adolescent/young adult decision-making involvement specific to heart transplant listing, and (2) to characterize their preferences specific to medical and end-of-life decision making. DESIGN: This cross-sectional research study utilized survey methods. Data were collected from October 2016 to March 2018. SETTING/PARTICIPANTS: Twelve adolescent and young adult patients listed for heart transplant (ages = 12-19 years) and one parent for each were enrolled at a single-center, US children's hospital. RESULTS: Consistent with their preferences, the majority of adolescent/young adult participants (82%) perceived a high level of involvement in the decision to be listed for transplant. Patient involvement in this decision was primarily by way of seeking advice or information from their parents and being asked to express their opinion from parents. Despite a preference among patients to discuss their prognosis and be involved in end-of-life decision making if seriously ill, only 42% of patients had discussed their end-of-life wishes with anyone. Few parents recounted having such discussions. Preferences regarding the timing and nature of end-of-life decision-making discussions varied. CONCLUSIONS: Although young people are involved in the decision to pursue heart transplantation, little attention is paid to involving them in discussions regarding end-of-life decision making in a manner that is consistent with individual preferences.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216319874689" target="_blank" rel="noreferrer noopener">10.1177/0269216319874689</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
Advance Care Planning
Article
Attention
Blume E D
Child
Clinical Article
Cousino M K
Cross-sectional Study
Decision Making
Female
heart graft
Human
Lowery R
Male
May 2020 List
Miller V A
Palliative Medicine
Patient Participation
Pilot Study
Prognosis
Rottach N
School Child
Schumacher K R
Smith C
Uzark K
Young Adult