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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
June 2017 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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Aspects Of Palliative Care In Child Neurology
Publisher
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Neuropediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
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Neurology; Palliative Therapy; Bereavement Counseling; Central Nervous System Tumor; Child; Child Care; Chromosome Aberration; Controlled Study; Coordination; Diagnosis; Family Study; Germany; Human; Human Experiment; Metabolic Disorder; Neurologic Disease; Only Child; Pain; Palliative Care; Quality Of Life; Spiritual Care; Terminal Care
Creator
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Nolte-Buchholtz S; Von Der Hagen M
Description
An account of the resource
Pediatric palliative medicine/care (PPC) is an approach to care that focuses on improving the quality of life of children facing a life limiting condition (LLC). LLCs are classified by the ACT (Association for children with life-threatening or terminal conditions and their families) concept in four groups: (i) conditions for which treatment may be feasible but can fail (ii) conditions in which premature deaths is inevitable but where long periods of participation in normal activities may be feasible (iii) progressive conditions without curative options where treatment is exclusively palliative (iv) irreversible but non-progressive conditions causing likelihood of premature death through complications. Neurological LLCs in children are represented in all four groups according to the ACT concept. Furthermore neuropediatric LLCs comprise up to 70% of the diagnoses in PPC subject to the criteria of a neurological disease entity (inclusion of CNS tumors, chromosomal anomalies, metabolic disorders etc.). The clinical course in neuropediatric LLCs differs from the course of oncological LLCs. Therefore the needs of the affected children, their families and their requirements of the PPC providers are different. In Germany PPC is often recognized solely as an end of life care. Typically, PPC accomplishes the objective of improving quality of life through symptom management e.g., pain control, coordination of care, communication and by providing psychosocial and spiritual support to the child and the family also in bereavement counseling. Within in the last years three different levels of specialized PPC have been established in Germany.
Identifier
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DOI: 10.1055/s-0036-1583743
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
Bereavement Counseling
Central Nervous System Tumor
Child
Child Care
Chromosome Aberration
Controlled Study
Coordination
Diagnosis
Family Study
Germany
Human
Human Experiment
June 2017 List
Metabolic Disorder
Neurologic Disease
Neurology
Neuropediatrics
Nolte-Buchholtz S
Only Child
Pain
Palliative Care
Palliative Therapy
Quality Of Life
Spiritual Care
Terminal Care
Von Der Hagen M
-
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
July 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
July List 2023
URL Address
<a href="http://doi.org/10.3390/children8080615" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children8080615</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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Specialized pediatric palliative care services in pediatric hematopoietic stem cell transplant centers
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
hematopoietic stem cell transplantation; palliative therapy; advance care planning; article; bereavement counseling; bereavement support; cause of death; child; controlled study; descriptive research; ethics; female; Hematopoietic Stem Cells; home; hospice; hospital; human; in-hospital mortality; major clinical study; male; mortality; Palliative Care; patient referral; pediatric intensive care unit; place of death; relapse; retrospective study; spiritual care; Stem Cell Transplantation
Creator
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Mekelenkamp H; Schroder T; Trigoso E; Hutt D; Galimard JE; Kozijn A; Dalissier A; Gjergji M; Liptrott S; Kenyon M; Murray J; Corbacioglu S; Bader P
Description
An account of the resource
Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study aimed to provide insight into current data on the place and cause of death of transplanted children, the available specialized pediatric palliative care services (SPPCS), and what services HSCT professionals feel the SPPCS team should provide. First, a retrospective database analysis on the place and cause of death of transplanted pediatric HSCT patients was performed. Second, a survey was performed addressing the availability of and views on SPPCS among HSCT professionals. Database analysis included 233 patients of whom the majority died in-hospital: 38% in the pediatric intensive care unit, 20% in HSCT units, 17% in other hospitals, and 14% at home or in a hospice (11% unknown). For the survey, 98 HSCT professionals from 54 centers participated. Nearly all professionals indicated that HSCT patients should have access to SPPCS, especially for pain management, but less than half routinely referred to this service at an early stage. We, therefore, advise HSCT teams to integrate advance care planning for pediatric HSCT patients actively, ideally from diagnosis, to ensure timely SPPCS involvement and maximize end-of-life preparation.Copyright © 2021 by the authors. Licensee MDPI, Basel, Switzerland.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3390/children8080615" target="_blank" rel="noreferrer noopener">10.3390/children8080615</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).
2021
Advance Care Planning
Article
Bader P
Bereavement Counseling
Bereavement Support
Cause Of Death
Child
Children
Controlled Study
Corbacioglu S
Dalissier A
Descriptive Research
Ethics
Female
Galimard JE
Gjergji M
Hematopoietic stem cell transplantation
Hematopoietic Stem Cells
Home
Hospice
Hospital
Human
Hutt D
in-hospital mortality
July List 2023
Kenyon M
Kozijn A
Liptrott S
Major Clinical Study
Male
Mekelenkamp H
Mortality
Murray J
Palliative Care
Palliative Therapy
Patient Referral
Pediatric Intensive Care Unit
Place Of Death
relapse
Retrospective Study
Schroder T
Spiritual Care
Stem Cell Transplantation
Trigoso E