1
40
4
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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
2022 Special Edition 3 - 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
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1186/s12904-022-01025-z" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-022-01025-z</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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Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool
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
2022
Creator
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Avoine-Blondin J; Dumont É; Marquis MA; Duval M; Sultan S
Description
An account of the resource
BACKGROUND: Advanced childhood cancer, a condition with no available cancer-focused treatment options, greatly impacts Quality of Life (QoL). We need appropriate assessment strategies to select adapted treatment targets, improve care and optimize communication. Our first goal was to identify the domains of patients' QoL by combining for the first time the perspectives of patients and parents with previously collected reports in professionals. Our second goal was to develop a simple QoL assessment tool and optimize its format and content for use in the childhood advanced cancer population. METHODS: To identify QoL domains, we conducted qualitative interviews with 7 young patients (4 girls, 3 boys, aged 13 ± 4 yrs) and 9 parents (7 mothers, 2 fathers) from our treatment centre. We used inductive thematic content analysis to code and categorize respondents' viewpoints. The first version of the tool (Advance QoL) was then drafted, and structured feedback was collected through interviews and a survey with 15 experts. We computed content validity indices. RESULTS: Apart from the physical, psychological, and social domains, participants insisted on four original themes: autonomy, pleasure, the pursuit of achievement, and the sense of feeling heard. This was in line with the categories found in a preliminary study involving professionals (PMID: 28137343). Experts evaluated the tool as clear, relevant, acceptable, and usable. They formulated recommendations on instructions, timeframe, and item formulations, which we implemented in the refined version. CONCLUSIONS: Advance QoL is an innovative tool targeting key life domains in childhood advanced cancer. It is focused on preserved abilities and targets of care. The refined version is appropriate for adult respondents within families and professionals. Future studies will develop versions for young ages to collect the experience of patients themselves. This will open on future reliability, validity, sensitivity, and implementation studies.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-022-01025-z" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-01025-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).
2022
2022 Special Edition 3 - Oncology List
Adolescent
Adult
Advanced Cancer
Avoine-Blondin J
BMC Palliative Care
Child
Concept Formation
Dumont É
Duval M
Female
Humans
Male
Marquis MA
Mixed-method
Neoplasms
Palliative Care
Pediatrics
psychology/therapy
Quality Of Life
Reproducibility of Results
Sultan S
Surveys And Questionnaires
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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
March 2018 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
March 2018 List
URL Address
<a href="http://doi.org/10.1542/peds.2012-1916" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2012-1916</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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Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
artificial feeding; concept formation; hydration; Terminal Care; Article; Child care; child death; clinical practice; Controlled Study; decision making; Female; Human; Male; parental attitude; personal experience; priority journal; Qualitative Research; quality of life; Religion; satisfaction
Creator
An entity primarily responsible for making the resource
Rapoport A; Shaheed J; Newman C; Rugg M; Steele R
Description
An account of the resource
BACKGROUND AND OBJECTIVE: Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under speci fi c circumstances. However, most of the evidence on FANH involves dying adults. There is a paucity of pediatric evidence to guide health care providers' and parents' decision-making around this practice. Objectives were (1) to explore the experiences of bereaved parents when a decision had been made to FANH during EOL care for their child and (2) to describe the perceived quality of death in these children, as reported by their parents. METHODS: This was a qualitative study using in-depth interviews with parents whose children died after a decision to FANH. Parental perceptions about the experience and their child's quality of death were explored. Interviews were audiotaped and transcribed, then data were analyzed by using interpretive description methodology. RESULTS: All parents were satisfi ed with their decision to FANH and believed that their child's death was generally peaceful and comfortable. The child's perceived poor quality of life was central to the decision to FANH, with feeding intolerance often contributing to this perception. Despite overall satisfaction, all parents had doubts and questions about the decision and benefited from ongoing assurances from the clinical team. CONCLUSIONS: FANH in children at the EOL is an acceptable form of palliation for some parents and may contribute to a death that is perceived to be peaceful and comfortable. In situations in which FANH may be a reasonable possibility, physicians should be prepared to introduce the option. Copyright _ 2013 by the American Academy of Pediatrics.
2013
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2012-1916" target="_blank" rel="noreferrer">10.1542/peds.2012-1916</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).
2013
Article
Artificial Feeding
Child Care
Child Death
Clinical Practice
Concept Formation
Controlled Study
Decision Making
Female
Human
Hydration
Male
March 2018 List
Newman C
Parental Attitude
Pediatrics
Personal Experience
Priority Journal
Qualitative Research
Quality Of Life
Rapoport A
Religion
Rugg M
Satisfaction
Shaheed J
Steele R
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/10.1111/j.1547-5069.1990.tb00225.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1547-5069.1990.tb00225.x</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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Reconceptualization of the uncertainty in illness theory
Publisher
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Image--the Journal Of Nursing Scholarship
Date
A point or period of time associated with an event in the lifecycle of the resource
1990
Subject
The topic of the resource
Humans; Social Values; Cues; Adaptation; Psychological; Models; Psychological Theory; Disease/psychology; Anomie; Concept Formation
Creator
An entity primarily responsible for making the resource
Mishel MH
Description
An account of the resource
The theory of uncertainty in illness has its strongest support among subjects who are experiencing the acute phase of illness or are in a downward illness trajectory (mishel, 1988a). The theory has not addressed the experience of living with continual, constant uncertainty in either a chronic illness or in an illness with a treatable acute phase and possible eventual recurrence. Since uncertainty characterizes many, most prevalent, long-term illness conditions, there is a need to reconceptualize the theory of uncertainty to include the experience of living with continual uncertainty. A close examination of the theoretical statements and the empirical data reported by Mishel resulted in the identification of areas of the theory that could be expanded and reconceptualized. The reconceptualization effort was primarily fueled by questions about the outcome portion of the uncertainty theory. To provide a contest for the expansion and reconceptualization of uncertainty, applicable parts of the theory are summarized below.
1990
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1547-5069.1990.tb00225.x" target="_blank" rel="noreferrer">10.1111/j.1547-5069.1990.tb00225.x</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
1990
Adaptation
Anomie
Backlog
Concept Formation
Cues
Disease/psychology
Humans
Image--the Journal Of Nursing Scholarship
Journal Article
Mishel MH
Models
Psychological
Psychological Theory
Social Values
-
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://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=med4&AN=10175164" target="_blank" rel="noreferrer">http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=med4&AN=10175164</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
Sibling bereavement: a concept analysis.
Publisher
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Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Humans; United States; bereavement; Death; Adult; Self Concept; Research Design; Sibling Relations; Psychological; Models; sibling bereavement; Concept Formation; T
Creator
An entity primarily responsible for making the resource
Robinson L; Mahon MM
Description
An account of the resource
Investigators of sibling bereavement contend that the death of a sibling represents a unique and intense loss experience. The empirical literature, however, lacks conceptual clarity about the characteristics of sibling bereavement. Metaphors of siblingship are widely applied and may compromise the integrity of theory development specific to sibling bereavement, particularly as this knowledge base is broadened. There is an immediate need to extend the descriptive knowledge base for sibling bereavement beyond adolescence, in large part to prepare to address the needs of the great number of adults whose brothers and sisters have died as a result of AIDS. The purpose of this article is to examine the concept of sibling bereavement by reviewing the empirical literature and by applying the Wilsonian Method (1963) of concept analysis. A preliminary model addressing the factors of critical attributes and personal outcome variables for bereavement research specific to sibling loss is presented.
1997-10
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
1997
Adult
Backlog
Bereavement
Concept Formation
Death
Death studies
Humans
Journal Article
Mahon MM
Models
Psychological
Research Design
Robinson L
Self Concept
sibling bereavement
Sibling Relations
T
United States