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40
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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 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
A name given to the resource
Keeping All Options Open: Parents' Approaches To Advance Care Planning
Publisher
An entity responsible for making the resource available
Health Expectations
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Advance Care Planning; ChildrenĀ and Young People; Interviews; Life-limiting Conditions; Life-threatening Illnesses; Parents
Creator
An entity primarily responsible for making the resource
Beecham E; Oostendorp L; Crocker J; Kelly P; Dinsdale A; Hemsley J; Russell J; Jones L; Bluebond-Langner M
Description
An account of the resource
BACKGROUND:
Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or experience of ACP.
OBJECTIVE:
To investigate how parents of children and young people with LLCs approach and experience ACP.
METHODS:
Open-ended, semi-structured interviews were conducted with parents of 18 children; nine children who were currently receiving palliative care services, and nine children who had received palliative care and died. Verbatim transcripts of audiotaped interviews were analysed following principles of grounded theory while acknowledging the use of deductive strategies, taking account of both the child's condition, and the timing and nature of decisions made.
RESULTS:
Parents reported having discussions and making decisions about the place of care, place of death and the limitation of treatment. Most decisions were made relatively late in the illness and by parents who wished to keep their options open. Parents reported different levels of involvement in a range of decisions; many wished to be involved in decision making but did not always feel able to do so.
DISCUSSION:
This study highlights that parents' approaches to decision making vary by the type of decision required. Their views may change over time, and it is important to allow them to keep their options open. We recommend that clinicians have regular discussions over the course of the illness in an effort to understand parents' approaches to particular decisions rather than to drive to closure prematurely.
Identifier
An unambiguous reference to the resource within a given context
10.1111/hex.12500
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).
2016
Advance Care Planning
Beecham E
Bluebond-Langner M
children and young people
Crocker J
Dinsdale A
Health Expectations
Hemsley J
Interviews
Jones L
Kelly P
Life-limiting Conditions
Life-threatening Illnesses
Oostendorp L
Parents
Russell J
September 2016 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
Backlog
URL Address
<a href="http://doi.org/10.1016/j.pcl.2014.05.001" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pcl.2014.05.001</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
Adolescents and Young Adults with Life-Threatening Illness: Special Considerations, Transitions in Care, and the Role of Pediatric Palliative Care
Publisher
An entity responsible for making the resource available
Pediatric Clinics Of North America
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Adolescents; Life-threatening illnesses; Transition of care; Young adults
Creator
An entity primarily responsible for making the resource
Linebarger JS; Ajayi TA; Jones BL
Description
An account of the resource
This article will cover the special considerations, challenges, and opportunities presented by caring for adolescents and young adults with life-threatening illnesses when the possibility of transition to an adult care setting arises.
2014-08
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pcl.2014.05.001" target="_blank" rel="noreferrer">10.1016/j.pcl.2014.05.001</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
2014
Adolescents
Ajayi TA
Backlog
Jones BL
Journal Article
Life-threatening Illnesses
Linebarger JS
Pediatric Clinics of North America
Transition of care
Young Adults