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40
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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
2020 Oncology 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
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1002/cncr.32553" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/cncr.32553</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
Unrealistic parental expectations for cure in poor-prognosis childhood cancer
Publisher
An entity responsible for making the resource available
Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
child; human; patient care; controlled study; female; major clinical study; male; cohort analysis; article; priority journal; childhood cancer; cancer recurrence; quality of life; confidence interval; cancer palliative therapy; interpersonal communication; expectation; clinical decision making; parental behavior; prospective study; cancer prognosis; neuroblastoma; questionnaire; medical record; pediatric patient; cancer risk; theoretical model; high risk population; odds ratio
Creator
An entity primarily responsible for making the resource
Mack J W; Cronin A M; Uno H; Shusterman S; Twist C J; Bagatell R; Rosenberg A; Marachelian A; Granger M M; Glade Bender J; Baker J N; Park J; Cohn S L; Levine A; Taddei S; Diller L R
Description
An account of the resource
Background: Many parents of children with advanced cancer pursue curative goals when cure is no longer possible. To the authors' knowledge, no pediatric studies to date have prospectively evaluated prognosis communication or influences on decision making in poor-prognosis childhood cancer.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/cncr.32553" target="_blank" rel="noreferrer noopener">10.1002/cncr.32553</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).
2020
Article
Bagatell R
Baker J N
Cancer
Cancer Palliative Therapy
Cancer Prognosis
Cancer Recurrence
cancer risk
Child
Childhood Cancer
Clinical Decision Making
Cohn S L
Cohort Analysis
confidence interval
Controlled Study
Cronin A M
Diller L R
Expectation
Female
Glade Bender J
Granger M M
High Risk Population
Human
Interpersonal Communication
Levine A
Mack J W
Major Clinical Study
Male
Marachelian A
Medical Record
Neuroblastoma
Odds Ratio
Oncology 2020 List
parental behavior
Park J
Patient Care
pediatric patient
Priority Journal
Prospective Study
Quality Of Life
Questionnaire
Rosenberg A
Shusterman S
Taddei S
theoretical model
Twist C J
Uno H
-
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
2019 Oncology 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
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.27713</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 'good death' in pediatric oncology
Publisher
An entity responsible for making the resource available
Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adult; advanced cancer; advanced practice provider; aged; avoidance behavior; childhood cancer; clergy; clinical article; cohort analysis; conference abstract; content analysis; controlled study; female; genetic transcription; human; male; medical staff; music; pediatric hospital; physiotherapist; prospective study; semi structured interview; software; sudden death; terminal care; young adult
Creator
An entity primarily responsible for making the resource
Taylor M; Barton K; Rosenberg A
Description
An account of the resource
Background: Empirical descriptions of a 'good death' exist for older adults with cancer, and these have served as the foundation for providing quality end of life care. In contrast, little is known about what, if anything, constitutes a 'good death' from the perspective of Adolescents and Young Adults (AYAs) with advanced cancer, their caregivers, or their medical teams. Pediatric oncology clinicians care for numerous patients at the end of life and can offer a breadth of insight regarding these difficult situations. Incorporating clinician experience can identify common pitfalls as well as successful strategies to inform and improve the delivery of patientcentered end of life care. Ultimately, understanding the intersection between patient, family, and provider values is critical to providing high quality end of life care for AYAs. This study provides a first step toward achieving this goal. Objective(s): This sub-analysis is part of a larger project that includes AYA patients, their parents, and bereaved parents. The objective of the present analysis was to identify factors that healthcare clinicians considered important at the end of life for AYA patients and their families. Design/Method: In this prospective qualitative cohort study, semi-structured interviews were conducted with n = 19 (74% female) oncology medical staff at a large academic pediatric hospital. Staff members included physicians (n = 7), advanced practice providers (n = 6), and other multidisciplinary providers including physical therapists, music/art therapists, and chaplains (n = 5). Interviews were audiorecorded verbatim, de-identified, and transcribed. Two primary coders conducted content analyses to identify relevant themes related to quality end of life care. Coding was reconciled iteratively with each transcript to informsubsequent thematic development and ensure saturation. Data were analyzed using ATLAS.ti software. Result(s): Twenty-seven major themes and 66 sub-themes emerged from provider interviews. Major themes included 'Acceptance,' 'Communication,' 'Meeting Families Where They Are,' and 'Protection.' Providers identified early and transparent communication within families, parental acceptance, and AYA/families maintaining a sense of control as features of a 'good death.' Lack of open communication, an unexpected/sudden death, and family denial or avoidance correlated with providers' experiences of a 'bad death.' Conclusion(s): Healthcare clinicians agree that compassionate and transparent communication are common denominators in good end of life care for AYAs with cancer. These insights may help clinicians caring for patients during a very difficult period of the cancer care trajectory. Future analysis of patient and parent interviews will guide recommendations for the practice of end of life care that is most aligned with patient/family values.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</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).
2019
Adult
Advanced Cancer
advanced practice provider
Aged
avoidance behavior
Barton K
Childhood Cancer
Clergy
Clinical Article
Cohort Analysis
conference abstract
Content Analysis
Controlled Study
Female
genetic transcription
Human
Male
Medical Staff
music
Oncology 2019 List
Pediatric Blood and Cancer
Pediatric Hospital
physiotherapist
Prospective Study
Rosenberg A
Semi Structured Interview
Software
sudden death
Taylor M
Terminal Care
Young Adult
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1017/S0012162206002027" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/S0012162206002027</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
Gross motor abilities in children with Hurler syndrome
Publisher
An entity responsible for making the resource available
Developmental Medicine and Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Male; Humans; Female; Infant; Motor Activity; Mucopolysaccharidosis I; tone and motor problems; MPSI; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Rosenberg A; Thorpe D; Mercer V; Dusing S C; Escolar M L
Description
An account of the resource
Hurler syndrome is the most severe form of mucopolysaccharidosis type I. There is a paucity of literature reporting the gross motor abilities of children with untreated Hurler syndrome. The purpose of this case series is to describe the gross motor abilities of one male and three female children (mean age 11.4mo [SD 3.1]; range 9.5-16mo) diagnosed with Hurler syndrome. The children were assessed using the Peabody Developmental Motor Scales, 2nd edition. Gross motor delays were present in all four children at the time of assessment, and were most evident in locomotor abilities for three of the children. All four children had range of motion limitations at multiple joints. This case series provides evidence for early gross motor delays in this population, as well as evidence for specific gross motor abilities of children with untreated Hurler syndrome. It is recommended that children diagnosed with Hurler syndrome be referred to physical therapy services upon diagnosis and that physical therapists be part of the interdisciplinary team involved in the care of children with Hurler syndrome.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/S0012162206002027" target="_blank" rel="noreferrer noopener">10.1017/S0012162206002027</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).
2006
characteristics
Developmental Medicine and Child Neurology
Dusing S C
Escolar M L
Female
Humans
Infant
Male
Mercer V
Motor Activity
MPSI
Mucopolysaccharidosis I
Rosenberg A
Thorpe D
tone and motor problems
Trajectory