1
40
5
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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
May 2017 List
Dublin Core
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Title
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The Needs Of Children With Life-limiting Conditions: A Healthcare-provider-based Model
Publisher
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The American Journal Of Hospice & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Attitude Of Health Personnel; Child; Child Advocacy; Cluster Analysis; Decision Making; Family/psychology; Feasibility Studies; Health Services Accessibility/organization & Administration; Health Services Needs And Demand/organization & Administration; Humans; Medical Futility; Models Organizational; New York; Pain/prevention & Control; Patient Care Team/organization & Administration; Patient-centered Care/organization & Administration; Pediatrics/organization & Administration; Psychology Child; Qualitative Research; Quality Assurance Health Care; Quality Of Life; Right To Die; Spirituality; Terminal Care/organization & Administration
Creator
An entity primarily responsible for making the resource
Donnelly James P; Huff Susan M; Lindsey Michael L; McMahon Kathy A; Schumacher JDonald
Description
An account of the resource
Pediatric hospice and palliative care has progressed in recent years with the development of new programs and models of care. Missing from the empirical literature, however is a model of the needs of children. The purpose of the present study was to develop an empirically based conceptual model of the needs of children with life-limiting conditions. Recognizing the value of both qualitative and quantitative data, concept mapping methodology was selected as an effective way to obtain data that reflected both the "big picture" and subtleties of pediatric end-of-life needs. The seven-cluster concept map appeared best in terms of both interpretability and parsimony. This model includes the following clusters of needs: 1) pain, 2) decision making, 3) medical system access and quality, 4) dignity and respect, 5) family-oriented care, 6) spirituality, and 7) psychosocial issues. We believe that the development of a comprehensive model of the needs of such children is a step toward concrete, measurable, and effective support for children and their families.
Identifier
An unambiguous reference to the resource within a given context
10.1177/104990910502200406
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).
2005
Attitude Of Health Personnel
Child
Child Advocacy
Cluster Analysis
Decision Making
Donnelly James P
Family/psychology
Feasibility Studies
Health Services Accessibility/organization & administration
Health Services Needs And Demand/organization & Administration
Huff Susan M
Humans
Lindsey Michael L
May 2017 List
McMahon Kathy A
Medical Futility
Models Organizational
New York
Pain/prevention & control
Patient Care Team/organization & administration
Patient-Centered Care/organization & administration
Pediatrics/organization & Administration
Psychology Child
Qualitative Research
Quality Assurance Health Care
Quality Of Life
Right to Die
Schumacher JDonald
Spirituality
Terminal Care/organization & Administration
The American Journal of Hospice & Palliative Care
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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
A name given to the resource
May 2023 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 List 2023
URL Address
<a href="http://doi.org/10.1007/s00431-023-04870-z" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00431-023-04870-z</a>
Dublin Core
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Title
A name given to the resource
End of life in patients attended by pediatric palliative care teams: what factors influence the place of death and compliance with family preferences?
Publisher
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European Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child death; childhood mortality; decision making; living will; palliative therapy; place of death; right to die; terminal care; article; child; death toll; female; follow up; home visit; hospital mortality; human; major clinical study; multicenter study; neuromuscular function; Palliative Care; probability; quality of life
Creator
An entity primarily responsible for making the resource
Pelaez-Cantero MJ; Morales-Asencio JM; Navarro-Mingorance A; Madrid-Rodriguez A; Tavera-Tolmo A; Escobosa-Sanchez O; Martino-Alba R
Description
An account of the resource
Abstract Each year, more than 8 million children worldwide require specialized palliative care, yet there is little evidence available in pediatrics on the characteristics of the end of life in this context. Our aim is to analyze the characteristics of patients who die in the care of specific pediatric palliative care teams. This is ambispective, analytical observational, multicenter study conducted between 1 January and 31 December 2019. Fourteen specific pediatric palliative care teams participated. There are 164 patients, most of them suffering from oncologic, neurologic, and neuromuscular processes. The follow-up time was 2.4 months. The parents voiced preferences in respect of the place of death for 125 of the patients (76.2%). The place of death for 95 patients (57.9%) was at the hospital and 67 (40.9%) was at home. The existence of a palliative care team for over 5 years is more likely to be related to families voicing preferences and their fulfillment. Longer follow-up times by pediatric palliative care teams were observed in families with whom preferences regarding the place of death were discussed and in patients who died at home. Patients who did not receive home visits, when the pediatric palliative care team did not provide full care and when preferences regarding the place of death were not discussed with parents, were more likely to die in the hospital. Conclusions: Advance planning of end-of-life care is one of the most important aspects of pediatric palliative care. The provision of services by the teams and the follow-up time are related to parents’ expressed preferences and the place of death.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00431-023-04870-z" target="_blank" rel="noreferrer noopener">10.1007/s00431-023-04870-z</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).
2023
Article
Child
Child Death
Childhood Mortality
death toll
Decision Making
Escobosa-Sanchez O
European Journal of Pediatrics
Female
Follow Up
Home Visit
Hospital Mortality
Human
living will
Madrid-Rodriguez A
Major Clinical Study
Martino-Alba R
May List 2023
Morales-Asencio JM
Multicenter Study
Navarro-Mingorance Á
neuromuscular function
Palliative Care
Palliative Therapy
Peláez-Cantero MJ
Place Of Death
Probability
Quality Of Life
Right to Die
Tavera-Tolmo A
Terminal Care
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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/peds.2009-0621" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2009-0621</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
Attitudes of adolescent cancer survivors toward end-of-life decisions for minors.
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Child; Female; Humans; Male; Euthanasia; Netherlands; Truth Disclosure; Sick Role; Right to Die; adolescent; Psychological; DNAR; Attitude to Death; Suicide; Assisted/px [Psychology]; Interview; decision making; Advance Directives; Passive; Palliative Care/px [Psychology]; Terminal Care/px [Psychology]; Neoplasms/px [Psychology]; Minors/px [Psychology]; Survivors/px [Psychology]; Euthanasia/px [Psychology]; Informed Consent/px [Psychology]
Creator
An entity primarily responsible for making the resource
Pousset G; Bilsen J; De Wilde J; Benoit Y; Verlooy J; Bomans A; Deliens L; Mortier F
Description
An account of the resource
OBJECTIVES: The present study aimed to investigate the attitudes of adolescent cancer survivors toward end-of-life decisions with life-shortening effects, including nontreatment decisions (NTDs), intensified alleviation of pain and symptoms (APS), and euthanasia, and the influence of illness experience on these attitudes., METHODS: Adolescent cancer survivors were interviewed with a structured questionnaire using hypothetical case descriptions. The results were compared with a study of 1769 adolescents without experience of chronic illness., RESULTS: Eighty-three adolescents, 11 to 18 years of age, were interviewed. In terminal situations, 70% to 90% found requests for NTDs acceptable, 84% requests for APS, and 57% to 64% requests for euthanasia. Requests for end-of-life decisions were less acceptable in nonterminal situations, where 28% found requests for NTDs acceptable, 39% to 47% requests for APS, and 11% to 21% requests for euthanasia. Frequently cited reasons for holding back physicians from administering a lethal drug to a child were the child not being well informed about his or her condition (92%) and the parents' opinion not being asked (92%). Compared with adolescents without experience with chronic illness, cancer survivors were more accepting toward requests for NTDs and APS in terminal situations., CONCLUSIONS: Adolescent cancer survivors, like other adolescents, want to be involved in medical decision-making at the end of life. They value autonomous decision-making, without excluding parents from the process. The experience of living through a life-threatening illness can alter adolescents' attitudes toward requests for NTDs and APS.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2009-0621" target="_blank" rel="noreferrer">10.1542/peds.2009-0621</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
Adolescent
Advance Directives
Assisted/px [Psychology]
Attitude To Death
Backlog
Benoit Y
Bilsen J
Bomans A
Child
De Wilde J
Decision Making
Deliens L
DNAR
Euthanasia
Euthanasia/px [Psychology]
Female
Humans
Informed Consent/px [Psychology]
Interview
Journal Article
Male
Minors/px [Psychology]
Mortier F
Neoplasms/px [psychology]
Netherlands
Palliative Care/px [psychology]
Passive
Pediatrics
Pousset G
Psychological
Right to Die
Sick Role
Suicide
Survivors/px [psychology]
Terminal Care/px [psychology]
Truth Disclosure
Verlooy J
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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/10.1108/14777271111124473" target="_blank" rel="noreferrer">http://doi.org/10.1108/14777271111124473</a>
<a href="http://search.proquest.com.ezproxy.library.ubc.ca/docview/864098253?pq-origsite=summon&accountid=14656" target="_blank" rel="noreferrer">http://search.proquest.com.ezproxy.library.ubc.ca/docview/864098253?pq-origsite=summon&accountid=14656</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
The over-interpretation of DNAR
Publisher
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Clinical Governance
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Medical Sciences; Studies; Emergency medical care; Business And Economics--Management; Duty of care; Patients rights; Right to Die
Creator
An entity primarily responsible for making the resource
Stewart M; Baldry C
Description
An account of the resource
The purpose of this paper is to investigate the impact of a Do Not Attempt Resuscitation (DNAR) order on subsequent decision making relating to the clinical care of the patient. The approach taken was a questionnaire based on a hypothetical clinical case, completed by medical and nursing staff of all grades in general medical, surgical, and orthopaedic wards. There is a reduction in the urgency attached to reviewing a deteriorating patient following institution of a DNAR order. Many doctors and nurses will not perform a range of interventions in the patient with a DNAR order in place. Confusion exists regarding whether an apnoeic, peri-arrest patient should be ventilated when a DNAR order is in place. This was a single-centre study, looking at a hypothetical situation. Further studies at more centres, and investigating different designs of DNAR form, would clarify the best format for these to take. A DNAR statement may often be interpreted as limiting other forms of care. This is more likely amongst more junior doctors and nursing staff, who are frequently the first line of assessment of these patients. More explicit DNAR forms may be advisable to confirm what treatments are to be continued. This paper demonstrates that DNAR decisions are taken as a surrogate marker for limiting other forms of care, and that this extends to medical and nursing staff at all grades.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1108/14777271111124473" target="_blank" rel="noreferrer">10.1108/14777271111124473</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
2011
Backlog
Baldry C
Business And Economics--Management
Clinical Governance
Duty of care
Emergency Medical Care
Journal Article
Medical Sciences
Patients rights
Right to Die
Stewart M
Studies
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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/10.1053/beog.2000.0171" target="_blank" rel="noreferrer">http://doi.org/10.1053/beog.2000.0171</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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Guidelines for an acceptable euthanasia procedure
Publisher
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Best Practice & Research: Clinical Obstetrics & Gynaecology
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Female; Humans; Adult; Practice Guidelines as Topic; Aged; Middle Aged; Netherlands; Physician's Role; Right to Die; Suicide; Death and Euthanasia; Assisted/psychology; Euthanasia/legislation & jurisprudence/psychology; Female/psychology/therapy; Genital Neoplasms
Creator
An entity primarily responsible for making the resource
Swarte NB; Heintz AP
Description
An account of the resource
The Netherlands is one of the very few countries that has guidelines for the practice of euthanasia. Each year there are about 9700 explicit requests for euthanasia or physician-assisted suicide (EAS), of which approximately 3600 patients are agreed upon in The Netherlands. Other countries have criticized the Dutch policy concerning EAS. First of all, it has been suggested that palliative care in The Netherlands is not adequate and that euthanasia is often requested by patients with depression. Additionally, part of the criticism is based on the regulation of the euthanasia procedure in The Netherlands. This chapter describes the guidelines for the procedure for euthanasia in The Netherlands, and focuses on some of the practical problems and issues of euthanasia. Also, the current situation concerning euthanasia and physician-assisted suicide in The Netherlands is summarized and described.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1053/beog.2000.0171" target="_blank" rel="noreferrer">10.1053/beog.2000.0171</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
2001
Adult
Aged
Assisted/psychology
Backlog
Best Practice & Research: Clinical Obstetrics & Gynaecology
Death and Euthanasia
Euthanasia/legislation & jurisprudence/psychology
Female
Female/psychology/therapy
Genital Neoplasms
Heintz AP
Humans
Journal Article
Middle Aged
Netherlands
Physician's Role
Practice Guidelines As Topic
Right to Die
Suicide
Swarte NB