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40
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Text
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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>
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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
An entity primarily responsible for making the resource
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
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URL Address
<a href="http://doi.org/10.1542/peds.2013-3608F" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2013-3608F</a>
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Title
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Judging the quality of mercy: drawing a line between palliation and euthanasia
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Child; Humans; Pediatrics; Euthanasia; Ethics; Suicide; Medical; Palliative Care; Assisted; Passive; 20th Century; History
Creator
An entity primarily responsible for making the resource
Morrison WE; Kang TI
Description
An account of the resource
Clinicians frequently worry that medications used to treat pain and suffering at the end of life might also hasten death. Intentionally hastening death, or euthanasia, is neither legal nor ethically appropriate in children. In this article, we explore some of the historical and legal background regarding appropriate end-of-life care and outline what distinguishes it from euthanasia. Good principles include clarity of goals and assessments, titration of medications to effect, and open communication. When used appropriately, medications to treat symptoms should rarely hasten death significantly. Medications and interventions that are not justifiable are also discussed, as are the implications of palliative sedation and withholding fluids or nutrition. It is imperative that clinicians know how to justify and use such medications to adequately treat suffering at the end of life within a relevant clinical and legal framework.
2014-02
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2013-3608F" target="_blank" rel="noreferrer">10.1542/peds.2013-3608F</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
20th Century
Assisted
Backlog
Child
Ethics
Euthanasia
History
Humans
Journal Article
Kang TI
Medical
Morrison WE
Palliative Care
Passive
Pediatrics
Suicide
-
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.ccc.2012.12.002" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.ccc.2012.12.002</a>
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Title
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Medical ethics in pediatric critical care
Publisher
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Critical Care Clinics
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Child; Humans; United States; Terminal Care; decision making; Parental Consent; Personal Autonomy; Pediatrics; Withholding Treatment; Professional-Family Relations; Dissent and Disputes; Truth Disclosure; Critical Care; Tissue and Organ Procurement; Ethics; Medical; Patient Rights; Clinical; Ethics Committees; Resource Allocation
Creator
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Orioles A; Morrison WE
Description
An account of the resource
Ethically charged situations are common in pediatric critical care. Most situations can be managed with minimal controversy within the medical team or between the team and patients/families. Familiarity with institutional resources, such as hospital ethics committees, and national guidelines, such as publications from the American Academy of Pediatrics, American Medical Association, or Society of Critical Care Medicine, are an essential part of the toolkit of any intensivist. Open discussion with colleagues and within the multidisciplinary team can also ensure that when difficult situations arise, they are addressed in a proactive, evidence-based, and collegial manner.
2013-04
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ccc.2012.12.002" target="_blank" rel="noreferrer">10.1016/j.ccc.2012.12.002</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
2013
Backlog
Child
Clinical
Critical Care
Critical Care Clinics
Decision Making
Dissent And Disputes
Ethics
Ethics Committees
Humans
Journal Article
Medical
Morrison WE
Orioles A
Parental Consent
Patient Rights
Pediatrics
Personal Autonomy
Professional-family Relations
Resource Allocation
Terminal Care
Tissue and Organ Procurement
Truth Disclosure
United States
Withholding Treatment
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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/10.1001/jamapediatrics.2014.2341" target="_blank" rel="noreferrer">http://doi.org/10.1001/jamapediatrics.2014.2341</a>
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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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Good-parent beliefs of parents of seriously ill children
Publisher
An entity responsible for making the resource available
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
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<a href="http://doi.org/10.1001/jamapediatrics.2014.2341" target="_blank" rel="noreferrer">10.1001/jamapediatrics.2014.2341</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
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
-
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/10.1089/jpm.2008.0251" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2008.0251</a>
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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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Training in difficult conversations: a national survey of pediatric hematology-oncology and pediatric critical care physicians
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Female; Humans; Male; Pediatrics; Health Care Surveys; Education; Communication; Physicians; Truth Disclosure; Medical Oncology; Critical Care; Fellowships and Scholarships; Hematology; Teaching; Medical
Creator
An entity primarily responsible for making the resource
Kersun L; Gyi L; Morrison WE
Description
An account of the resource
BACKGROUND: In pediatric oncology and critical care, physicians give difficult news, including discussions regarding palliative care and comfort measures, but there are minimal data regarding fellowship program preparation for this task. PURPOSE: We surveyed graduates of pediatric hematology/oncology and critical care fellowships regarding communication training to describe teaching methods, assess which were helpful, and determine whether comfort level is related to training experiences. METHODS: A 12-question Web survey was sent to physicians completing fellowship in the previous 5 years. RESULTS: Of 345 fellows identified, 171 (50%) responded. Prior training included observing senior physicians (100%), being observed (78%), reading (56%), lectures (46%), role-play (20%), workshops (16%), simulation (13%), and videos (13%). Observing senior physicians was thought most helpful. More years since training (p
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2008.0251" target="_blank" rel="noreferrer">10.1089/jpm.2008.0251</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
2009
Backlog
Communication
Critical Care
Education
Fellowships And Scholarships
Female
Gyi L
Health Care Surveys
Hematology
Humans
Journal Article
Journal of Palliative Medicine
Kersun L
Male
Medical
Medical Oncology
Morrison WE
Pediatrics
Physicians
Teaching
Truth Disclosure