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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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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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 2016 List
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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Investing In Uncertainty: Young Adults With Life-limiting Conditions Achieving Their Developmental Goals.
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
2016
Subject
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Disabilities; Transition; Adolescent; Policy; Perspectives; Health-care; Palliative Care; Health Care Sciences & Services; Youth
Creator
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Cook KA; Jack SM; Siden H; Thabane L; Browne G
Description
An account of the resource
BACKGROUND:
With improvements in pediatric care and technology, more young adults (YAs) with life-limiting conditions (LLCs) are surviving into adulthood. However, they have limited expectations to live beyond the first decade of adulthood. This study describes the monumental efforts required for YAs with LLCs to achieve their goals in an abbreviated life.
OBJECTIVES:
The experiences and aspirations of YAs with LLCs to achieve their goals are relatively unknown. This report focuses on their experiences of living with uncertainty and its impact on achieving developmental goals.
DESIGN:
This study is one component of a larger descriptive study using an innovative bulletin board focus group to examine life experiences of YAs with LLCs.
RESULTS:
YAs with LLCs share the aspirations and goals of all YAs. Some participants demonstrated a striking capacity to navigate system barriers and achieve their goals, whereas others "got stuck" resulting in lost opportunities. Successful personal life investments were possible if resources were made available, coordinated, navigable, and responsive to new and special requests. Transformative changes to health, social care, and community services are necessary to support their YA ambitions.
CONCLUSIONS:
This study gave voice to those who were previously unheard and demonstrates the monumental hurdles YAs with LLCs face to achieve their goals. A palliative approach to care can mitigate unnecessary hardships and support their goals.
Rights
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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).
2016
Adolescent
Browne G
Cook KA
Disabilities
Health Care Sciences & Services
Health-care
Jack SM
Journal of Palliative Medicine
May 2016 List
Palliative Care
Perspectives
Policy
Siden H
Thabane L
Transition
Youth
-
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/10.1155/2013/286751" target="_blank" rel="noreferrer">http://doi.org/10.1155/2013/286751</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
Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care
Publisher
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Nursing Research And Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Creator
An entity primarily responsible for making the resource
Cook KA; Siden H; Jack S; Thabane L; Browne G
Description
An account of the resource
Advances in pediatric care have not provided the interdisciplinary support services required by those young adults with pediatric life-threatening conditions (pedLTCs) who live beyond childhood but have limited expectations to live past early adulthood. These young adults, the first generation to live into adulthood, face multiple challenges transitioning from a plethora of pediatric palliative services to scant adult health services. In a case study, using an innovative bulletin board focus group, we describe the complex interplay of the health, education, and social service sectors in this transition. Our descriptions include system deficits and strengths and the young adults' resilience and coping strategies to overcome those deficits and move forward with their lives. Young adults with pedLTC need knowledgeable providers, coordinated and accessible services, being respected and valued, and services and supports that promote independence. We recommend implementation of multidisciplinary solutions that are focused on young adult priorities to ensure seamless access to resources to support these young adults' health, educational, vocational, and social goals. The input and voice of young adults in the development of these services are imperative to ensure that multisystem services support their needs and life goals.
2013
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1155/2013/286751" target="_blank" rel="noreferrer">10.1155/2013/286751</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
2013
Backlog
Browne G
Cook KA
Jack S
Journal Article
Nursing Research And Practice
Siden H
Thabane L