1
40
4
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Text
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1186/1472-684X-13-9" target="_blank" rel="noreferrer">http://doi.org/10.1186/1472-684X-13-9</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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Regoaling: a conceptual model of how parents of children with serious illness change medical care goals
Publisher
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Bmc Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
decision making
Creator
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Hill DL; Miller VA; Walter JK; Carroll KW; Morrison WE; Munson DA; Kang TI; Hinds PS; Feudtner C
Description
An account of the resource
BACKGROUND: Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child's quality of life. We call this process of transitioning from one set of goals to another regoaling. DISCUSSION: Regoaling involves factors that either promote or inhibit the regoaling process, including disengagement from goals, reengagement in new goals, positive and negative affect, and hopeful thinking. We examine these factors in the context of parental decision making for a seriously ill child, presenting a dynamic conceptual model of regoaling. This model highlights four research questions that will be empirically tested in an ongoing longitudinal study of medical decision making among parents of children with serious illness. Additionally, we consider potential clinical implications of regoaling for the practice of pediatric palliative care. SUMMARY: The psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals. A greater understanding of how parents undergo this transition may enable clinicians to better support them through this difficult process.
2014
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/1472-684X-13-9" target="_blank" rel="noreferrer">10.1186/1472-684X-13-9</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
The nature or genre of the resource
Journal Article
2014
Backlog
BMC Palliative Care
Carroll KW
Decision Making
Feudtner C
Hill DL
Hinds PS
Journal Article
Kang TI
Miller VA
Morrison WE
Munson DA
Walter JK
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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
Backlog
URL Address
<a href="http://doi.org/10.1542/pir.35-8-318" target="_blank" rel="noreferrer">http://doi.org/10.1542/pir.35-8-318</a>
<a href="http://pedsinreview.aappublications.org/content/35/8/318" target="_blank" rel="noreferrer">http://pedsinreview.aappublications.org/content/35/8/318</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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Integration of Palliative Care Into the Care of Children With Serious Illness
Publisher
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Pediatrics In Review / American Academy Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
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Kang TI; Munson DA; Hwang J; Feudtner C
Identifier
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<a href="http://doi.org/10.1542/pir.35-8-318" target="_blank" rel="noreferrer">10.1542/pir.35-8-318</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
Description
An account of the resource
2014-08
2014
Backlog
Feudtner C
Hwang J
Journal Article
Kang TI
Munson DA
Pediatrics In Review / American Academy Of Pediatrics
-
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/10.1001/jamapediatrics.2014.2341" target="_blank" rel="noreferrer">http://doi.org/10.1001/jamapediatrics.2014.2341</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
Good-parent beliefs of parents of seriously ill children
Publisher
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Jama Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
adolescent; Child; Cross-Sectional Studies; Female; Humans; infant; Male; Parent-Child Relations; Parents; Questionnaires; Chronic disease; Child welfare; Acute Disease; Stress; Practice; Preschool; Adaptation; Psychological; Attitudes; Newborn; Health Knowledge; Philadelphia
Creator
An entity primarily responsible for making the resource
Feudtner C; Walter JK; Faerber JA; Hill DL; Carroll KW; Mollen CJ; Miller VA; Morrison WE; Munson DA; Kang T; Hinds PS
Description
An account of the resource
IMPORTANCE: Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. OBJECTIVE: To assess parents' perceptions regarding the relative importance of 12 good-parent attributes. DESIGN, SETTING, AND PARTICIPANTS: A cross-sectional, discrete-choice experiment was conducted at a children's hospital. Participants included 200 parents of children with serious illness. MAIN OUTCOMES AND MEASURES: Ratings of 12 good-parent attributes, with subsequent use of latent class analysis to identify groups of parents with similar ratings of attributes, and ascertainment of whether membership in a particular group was associated with demographic or clinical characteristics. RESULTS: The highest-ranked good-parent attribute was making sure that my child feels loved, followed by focusing on my child's health, making informed medical care decisions, and advocating for my child with medical staff. We identified 4 groups of parents with similar patterns of good-parent-attribute ratings, which we labeled as: child feels loved (n=68), child's health (n=56), advocacy and informed (n=55), and spiritual well-being (n=21). Compared with the other groups, the child's health group reported more financial difficulties, was less educated, and had a higher proportion of children with new complex, chronic conditions. CONCLUSIONS AND RELEVANCE: Parents endorse a broad range of beliefs that represent what they perceive they should do to be a good parent for their seriously ill child. Common patterns of how parents prioritize these attributes exist, suggesting future research to better understand the origins and development of good-parent beliefs among these parents. More important, engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support.
2015-01
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jamapediatrics.2014.2341" target="_blank" rel="noreferrer">10.1001/jamapediatrics.2014.2341</a>
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).
Type
The nature or genre of the resource
Journal Article
2015
Acute Disease
Adaptation
Adolescent
Attitudes
Backlog
Carroll KW
Child
Child welfare
Chronic Disease
Cross-sectional Studies
Faerber JA
Female
Feudtner C
Health Knowledge
Hill DL
Hinds PS
Humans
Infant
JAMA Pediatrics
Journal Article
Kang T
Male
Miller VA
Mollen CJ
Morrison WE
Munson DA
Newborn
Parent-child Relations
Parents
Philadelphia
Practice
Preschool
Psychological
Questionnaires
Stress
Walter JK
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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
August 2017 List
URL Address
<a href="http://www.jognn.org/article/S0884-2175(17)30086-2/fulltext" target="_blank" rel="noreferrer">http://www.jognn.org/article/S0884-2175(17)30086-2/fulltext</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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A Proposed Model for Perinatal Palliative Care
Publisher
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Journal Of Obstetric, Gynecologic, And Neonatal Nursing: Jognn
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Multidisciplinary Care Team; Palliative Care; Perinatal Loss; Trisomy 13
Creator
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Cole JCM; Moldenhauer JS; Jones TR; Shaughnessy E; Zarrin H; Coursey AL; Munson DA
Description
An account of the resource
Perinatal palliative care allows for an active partnership among a pregnant woman, her family, and her multidisciplinary treatment team and addresses her specialized medical care, emotional, social, and familial needs when a life-limiting fetal diagnosis is confirmed. The purpose of this article is to highlight the multidisciplinary care model used within a perinatal palliative care program. A case study provides a unique perspective on support needed for parents who anticipate that their newborn may die before or shortly after birth.
Copyright © 2017 AWHONN, the Association of Women's Health, Obstetric and Neonatal Nurses. Published by Elsevier Inc. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1016/j.jogn.2017.01.014" target="_blank" rel="noreferrer">10.1016/j.jogn.2017.01.014</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).
2017
August 2017 List
Cole JCM
Coursey AL
Jones TR
Journal of obstetric, gynecologic, and neonatal nursing: JOGNN
Moldenhauer JS
Multidisciplinary Care Team
Munson DA
Palliative Care
Perinatal Loss
Shaughnessy E
Trisomy 13
Zarrin H