2
40
241
-
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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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.1177/1043454208315546" target="_blank" rel="noreferrer">http://doi.org/10.1177/1043454208315546</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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Chemotherapy-related fatigue in childhood cancer: correlates, consequences, and coping strategies
Publisher
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Journal Of Pediatric Oncology Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Child; Humans; Parents; Questionnaires; Adaptation; Psychological; Antineoplastic Agents/adverse effects; Fatigue/chemically induced; Neoplasms/drug therapy/psychology
Creator
An entity primarily responsible for making the resource
Whitsett SF; Gudmundsdottir M; Davies B; McCarthy P; Friedman D
Description
An account of the resource
The aim of this research is to examine the experience and impact of chemotherapy-related fatigue in recently diagnosed pediatric oncology patients. A repeated-measures, within-subjects, mixed (quantitative plus qualitative) design was used to prospectively assess fatigue during early chemotherapy cycles and to compare fatigue to depressive symptoms. Parental interviews collected concurrently were analyzed for descriptions of the child's fatigue and mood states and for strategies to cope with fatigue. Results indicated a significant correlation between fatigue and depression, but qualitative analyses suggested that the 2 phenomena may be unique and distinguishable. Qualitative analyses of parent interviews also identified specific strategies that were frequently used in response to high levels of fatigue. The findings illustrate the significant impact of chemotherapy-related fatigue in children being treated for cancer. The study also provides guidance for the assessment of fatigue and related symptoms and identifies specific strategies for coping with fatigue.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1043454208315546" target="_blank" rel="noreferrer">10.1177/1043454208315546</a>
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).
Type
The nature or genre of the resource
Journal Article
2008
Adaptation
Antineoplastic Agents/adverse effects
Backlog
Child
Davies B
Fatigue/chemically induced
Friedman D
Gudmundsdottir M
Humans
Journal Article
Journal Of Pediatric Oncology Nursing
McCarthy P
Neoplasms/drug therapy/psychology
Parents
Psychological
Questionnaires
Whitsett SF
-
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
September 2021 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
September 2021 List
URL Address
<a href="http://doi.org/10.1002/cncr.33763" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/cncr.33763</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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Children and adolescents with hematologic cancers deserve better end-of-life care
Publisher
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Cancer.
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
children; adolescents; palliative care; cancer; end of life; administrative data; hematologic; high intensity
Creator
An entity primarily responsible for making the resource
Rapoport A; Gupta S
Description
An account of the resource
Children and adolescents with hematologic malignancies consistently experience higher rates of aggressive care at the end of life. Clinicians and researchers must now turn their attention to reducing this disparity.
Identifier
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<a href="http://doi.org/10.1002/cncr.33763" target="_blank" rel="noreferrer noopener">10.1002/cncr.33763</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
Administrative data
Adolescents
Cancer
Cancer.
Children
End Of Life
Gupta S
hematologic
high intensity
Palliative Care
Rapoport A
September 2021 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
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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.
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
Children in palliative medicine: An overview
Creator
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Davies B; Siden H
Publisher
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Oxford: Oxford University Press
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
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).
Source
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In Hanks G, Cherny NI, Christakis NA, Fallon M, Kaasa S & Portenoy RK (Eds.). Oxford Textbook of Palliative Medicine (4th edition). Oxford: Oxford University Press, 1301-17.
2009
Davies B
Siden 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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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
URL Address
<a class="aap-doi-text" href="https://doi.org/10.1542/peds.2016-2956" target="_blank" rel="noreferrer">https://doi.org/10.1542/peds.2016-2956</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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Children's End-of-life Health Care Use And Cost
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Cause Of Death; Child; Health Care Costs; Only Child; Terminal Care
Creator
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Widger K; Seow H; Rapoport A; Chalifoux M; Tanuseputro P
Description
An account of the resource
BACKGROUND AND OBJECTIVES: Heath care use and cost for children at the end of life is not well documented across the multiple sectors where children receive care. The study objective was to examine demographics, location, cause of death, and health care use and costs over the last year of life for children aged 1 month to 19 years who died in Ontario, Canada. METHODS: We conducted a population-based retrospective cohort study using administrative databases to determine the characteristics of and health care costs by age group and cause of death over a 3-year period from 2010 to 2013. RESULTS: In our cohort of 1620 children, 41.6% died of a chronic disease with wide variation across age groups. The mean health care cost over the last year of life was $78 332 (Canadian) with a median of $18 450, reflecting the impact of high-cost decedents. The mean costs for children with chronic or perinatal/congenital illnesses nearly tripled over the last 4 months of life. The majority of costs (67.0%) were incurred in acute care settings, with 88.0% of children with a perinatal/congenital illness and 79.7% with a chronic illness dying in acute care. Only 33.4% of children received home care in the last year of life. CONCLUSIONS: Children in Ontario receive the majority of their end-of-life care in acute care settings at a high cost to the health care system. Initiatives to optimize care should focus on early discussion of the goals of care and assessment of whether the care provided fits with these goals.
Identifier
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<a href="https://doi.org/10.1542/peds.2016-2956" target="_blank" rel="noreferrer">10.1542/peds.2016-2956</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).
2017
Cause Of Death
Chalifoux M
Child
Health Care Costs
May 2017 List
Only Child
Pediatrics
Rapoport A
Seow H
Tanuseputro P
Terminal Care
Widger K
-
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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February 2022 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
February 2022 List
URL Address
<a href="http://doi.org/10.1089/jpm.2021.0175" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2021.0175</a>
Dublin Core
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Title
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Children's Health Care Utilization and Cost in the Last Year of Life: A Cohort Comparison with and without Regional Specialist Pediatric Palliative Care
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
pediatrics; palliative care; health care; cost; utilization
Creator
An entity primarily responsible for making the resource
Lysecki DL; Gupta S; Rapoport A; Rhodes E; Spruin S; Vadeboncoeur C; Widger K; Tanuseputro P
Description
An account of the resource
Background: Research remains inconclusive regarding the impact of specialist pediatric palliative care (SPPC) on health care utilization and cost. Objective: To better understand and quantify the impact of regional SPPC services on children's health care utilization and cost near end of life. Design: A retrospective cohort study used administrative databases to compare outcomes for child decedents (age 31 days to 19 years) from two similar regions in Ontario, Canada between 2010 and 2014, wherein one region had SPPC services (SPPC+) and the other did not (SPPC−). Measurements: Administrative databases provided demographics, health care utilization (days), and costs Canadian dollars) across settings in the last year of life, and location of death. Multivariable analyses produced relative rates (RRs) of health care days (acute and home care), intensive care unit (ICU) days, and health care costs (inpatient, outpatient, home, and physician) as well as the odds ratio (OR) of in-hospital death. Counterfactual analysis quantified the differences in utilization and costs. Results: A total of 807 children were included. On multivariable analysis, residence in the SPPC+ region (n = 363) was associated with fewer mean health care days (RR = 0.73; 95% confidence interval [CI]: 0.59–0.90); fewer mean ICU days (RR = 0.64; 95% CI: 0.44–0.94); lower mean health care costs (RR = 0.71; 95% CI: 0.56–0.91); and lower likelihood of in-hospital death (OR = 0.67; 95% CI: 0.49–0.92). The counterfactual analysis estimated mean reductions of 16.2 days (95% CI: 14.4–18.0) and $24,940 (95% CI: $21,703–$28,177) per child in the SPPC+ region. Conclusions: Although not a causal study, these results support an association between regional SPPC services and decreased health care utilization, intensity, and cost for children near end of life.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2021.0175" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0175</a>
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).
2022
Cost
February 2022 List
Gupta S
Health Care
Journal of Palliative Medicine
Lysecki DL
Palliative Care
Pediatrics
Rapoport A
Rhodes E
Spruin S
Tanuseputro P
utilization
Vadeboncoeur C
Widger K
-
Dublin Core
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Title
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May 2022 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 2022 List
URL Address
<a href="http://doi.org/10.9778/cmajo.20210239" target="_blank" rel="noreferrer noopener">http://doi.org/10.9778/cmajo.20210239</a>
Dublin Core
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Title
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Clinician views on and ethics priorities for authorizing medical cannabis in the care of children and youth in Canada: a qualitative study
Publisher
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CMAJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Canada; Children; Clinicians; Ethics; Medical cannabis; Qualitative study; Youth
Creator
An entity primarily responsible for making the resource
Gunning M; Rotenberg AD; Kelly LE; Crooks B; Oberoi S; Rapoport AL; Rassekh SR; Illes J
Description
An account of the resource
BACKGROUND: The use of cannabis for medical purposes by pediatric patients is expanding across Canada; however, supporting evidence, federal regulations and treatment guidelines are lacking. To understand factors affecting treatment decisions in this landscape, we sought to delineate clinician perspectives, ethics priorities and values for cannabis authorization. METHOD(S): We sampled participants purposefully through Canadian Childhood Cannabinoid Clinical Trials listservs, which include the majority of pediatric oncologists and palliative care physicians practising in Canada, among many other pediatric physicians and clinicians. Inclusion criteria were being a practising clinician in Canada, involvement in the care of children and willingness to be interviewed regardless of stance on medical cannabis. In November and December 2020, we conducted semistructured interviews focusing on principles, values and priorities, including medical, professional, regulatory, evidentiary and social considerations, for authorizing medical cannabis to children. Interviews were recorded, transcribed and analyzed by means of deductive and inductive thematic methods. RESULT(S): We conducted 18 interviews with a diverse group of clinicians representing a range of specialties within pediatric care, including neurology, palliative care, oncology, family medicine and pharmacology. The interviews yielded 4 themes and 12 subthemes related to a priori (medical, professional, regulatory, evidentiary and social themes) and emergent themes. The 4 themes of access, relationships and relational autonomy (autonomy within relationships), medically appropriate use and research priorities were grounded in principles of harm reduction. Participants described problematic authorization procedures that negatively affect patient use. Principles associated with relational autonomy were highlighted as a feature of open clinical communication. Benefits of appropriate medical uses weighed positively over risks, even in the context of potential effects on neurodevelopment. Participants expressed that more research is essential to align medical cannabis with biomedical standards. INTERPRETATION: Clinicians reported pursuing ethical use of medical cannabis for pediatric patients and prioritizing their safety under principles of harm reduction. There is a need for evidence about neurodevelopmental risks, support for research, treatment guidelines and greater knowledge about stakeholder perspectives to alleviate burdens related to use of medical cannabis for pediatric patients in Canada. Copyright © 2022 CMA Impact Inc. or its licensors.
Identifier
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<a href="http://doi.org/10.9778/cmajo.20210239" target="_blank" rel="noreferrer noopener">10.9778/cmajo.20210239</a>
2022
Canada
Children
Clinicians
Cmaj Open
Crooks B
Ethics
Gunning M
Illes J
Kelly LE
May 2022 List
medical cannabis
Oberoi S
Qualitative Study
Rapoport AL
Rassekh SR
Rotenberg AD
Youth
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.1080/074811899201163" target="_blank" rel="noreferrer">http://doi.org/10.1080/074811899201163</a>
Dublin Core
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Title
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Comparing parent loss with sibling loss
Publisher
An entity responsible for making the resource available
Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
1999
Subject
The topic of the resource
adolescent; Child; Female; Humans; Male; United States; bereavement; Canada; Parent-Child Relations; Sex Factors; Sibling Relations; adolescent; bereavement; Comparative Study; Psychological Tests; sibling bereavement
Creator
An entity primarily responsible for making the resource
Worden JW; Davies B; McCown D
Description
An account of the resource
The death of a loved one is a traumatic loss for children, but little attention has been paid to how children's responses vary according to who died--a parent or a sibling. This article reports the findings of a comparison between children's responses to parent and sibling loss. Two samples of bereaved children were combined for the project, which compared children's scores on the Achenbach Child Behavior Checklist. Findings indicated that there were no significant differences between the two loss groups in the total number of problems, in any of the syndrome scales, or in the percentage of children at risk. However, when the two loss groups were considered by gender, differences appeared--boys were more impacted by the loss of a parent than by the loss of a sibling and girls were most affected by the loss of a sibling, particularly a sister. Possible explanations for these differences are discussed.
1999-02
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/074811899201163" target="_blank" rel="noreferrer">10.1080/074811899201163</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
1999
Adolescent
Backlog
Bereavement
Canada
Child
Comparative Study
Davies B
Death studies
Female
Humans
Journal Article
Male
McCown D
Parent-child Relations
Psychological Tests
Sex Factors
sibling bereavement
Sibling Relations
United States
Worden JW
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.1177/1049732308327346" target="_blank" rel="noreferrer">http://doi.org/10.1177/1049732308327346</a>
Dublin Core
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Title
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Conducting a qualitative culture study of pediatric palliative care
Publisher
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Qualitative Health Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Creator
An entity primarily responsible for making the resource
Davies B; Larson J; Contro N; Reyes-Hailey C; Ablin AR; Chesla CA; Sourkes B; Cohen H
Description
An account of the resource
While conducting a grounded theory study of Chinese American and Mexican American families' experiences in pediatric palliative care, we encountered a number of unanticipated challenges regarding project development, Institutional Review Boards, recruitment, data collection, and data analysis. In this article, we describe our experiences, strategies, and insights for the benefit of other researchers and clinicians in the field.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049732308327346" target="_blank" rel="noreferrer">10.1177/1049732308327346</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
Ablin AR
Backlog
Chesla CA
Cohen H
Contro N
Davies B
Journal Article
Larson J
Qualitative Health Research
Reyes-Hailey C
Sourkes B
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.1080/073993398246070" target="_blank" rel="noreferrer">http://doi.org/10.1080/073993398246070</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
Conducting feminist research in nursing: personal and political challenges
Publisher
An entity responsible for making the resource available
Health Care For Women International
Date
A point or period of time associated with an event in the lifecycle of the resource
1998
Subject
The topic of the resource
Female; Humans; Attitude of Health Personnel; Choice Behavior; Feminism; Women/psychology; Nurses/psychology; Nursing Methodology Research/methods/standards; Politics; Research Personnel/psychology
Creator
An entity primarily responsible for making the resource
Maxwell-Young L; Olshansky E; Steele R
Description
An account of the resource
The challenges of doing feminist nursing research include both personal and political elements. Some of these arise from the threefold influences of being nurses, women, and academics within a larger social context that may be antithetical to feminist values. This paper explores such challenges, using examples from the research of each of the three authors. It includes discussion of such concepts as the tendency to reify certain methodologies and the political forces that may drive research decisions. The authors summarize the challenges of doing feminist nursing research as learning to integrate diverse approaches rather than adhering to a politically correct way of conducting research. They draw on their own research experiences to illustrate the internal conflicts and personal struggles inherent in overcoming the perception that there is one proper way to conduct feminist inquiry.
1998
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/073993398246070" target="_blank" rel="noreferrer">10.1080/073993398246070</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
1998
Attitude Of Health Personnel
Backlog
Choice Behavior
Female
Feminism
Health Care For Women International
Humans
Journal Article
Maxwell-Young L
Nurses/psychology
Nursing Methodology Research/methods/standards
Olshansky E
Politics
Research Personnel/psychology
Steele R
Women/psychology
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.1177/0269216309103122" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216309103122</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
Considerations for ethics in multisite research in paediatric palliative care
Publisher
An entity responsible for making the resource available
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
PPC Book Chapter 2011 (Kim Widger); Multi-site Ethics; NET CV
Creator
An entity primarily responsible for making the resource
Cadell S; Ho G; Jacques L; Wilson K; Davies B; Steele R
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216309103122" target="_blank" rel="noreferrer">10.1177/0269216309103122</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
Description
An account of the resource
2009
2009
Backlog
Cadell S
Davies B
Ho G
Jacques L
Journal Article
Multi-site Ethics
NET CV
Palliative Medicine
PPC Book Chapter 2011 (Kim Widger)
Steele R
Wilson K
-
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
PedPalASCNet Member Posters
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.
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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Contributions and recognition of patient partners in pediatric health research: a rapid scoping review protocol
Creator
An entity primarily responsible for making the resource
Pawliuk C; Hermansen AM; Barrans C; Siden H
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.31219/osf.io/svztf">10.31219/osf.io/svztf</a>
Publisher
An entity responsible for making the resource available
OSF Preprints
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Description
An account of the resource
Objective: The objective of this rapid scoping review is to: 1) assess the prevalence of acknowledgement and authorship of patient partners in pediatric health research; 2) understand how patient partners contribute through the research process; and 3) assess how patient engagement is identified in publications.
Introduction: Patient-Oriented Research (POR) is an area of increasing interest and activity, with growing funding opportunities. Patient partners with significant contributions to a research project may be eligible for formal acknowledgment or authorship, however locating patient-engaged studies is difficult and time consuming, so there is little understanding of the prevalence of patient partner acknowledgement or authorship and how patient partners typically contribute to research projects.
Inclusion criteria: This rapid scoping review will consider evidence sources that investigate topics related to pediatric patients aged (0-19 years) and that include acknowledgement or descriptions of one or more patient partner(s) contributions in one or more studies. We will exclude sources that include non-pediatric patients, are not in English, and not published in full in a journal (e.g. conference abstracts).
Methods: We will search MEDLINE (Ovid), Embase (Ovid) and CINAHL (EBSCOhost). In addition, we will search key sources of POR literature. To increase the rapidity of this review, only 25% of sources will be reviewed and extracted by two team members and the remaining sources will be screened and extracted by a single reviewer. Data will be extracted using a data extraction tool developed by the reviewers. The results will be presented in a tabular/and/or charted format and accompanied by a narrative summary describing how the results related to the review objectives and questions.
acknowledgement
Authorship
Barrans C
Hermansen AM
patient and public involvement
patient partner
Patient Partner Recognition
patient-oriented research
Pawliuk C
Preprint
protocol
rapid review
Scoping review
Siden 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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.1177/0269216309346596" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216309346596</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
Creating social work competencies for practice in hospice palliative care
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Child; Humans; Palliative Care; Adult; Canada; Professional Role; Clinical Competence; Interprofessional Relations; Delphi Technique; Practice; PPC Book Chapter 2011 (Kim Widger); Attitudes; Health Knowledge; hospice care; Social Work/education; Educational Measurement/standards
Creator
An entity primarily responsible for making the resource
Bosma H; Johnston M; Cadell S; Wainwright W; Abernethy N; Feron A; Kelley ML; Nelson F
Description
An account of the resource
Social workers play an important role in the delivery of Hospice Palliative Care in many diverse settings. The profession brings a unique perspective to end-of-life care that reflects and supports the holistic philosophy of Hospice Palliative Care. Despite the prominent and longstanding position of social work in this area, the role and functions of social workers had not been clearly defined. A Canadian task group of social work practitioners and educators utilized a modified Delphi process to consult front line clinicians nationally, and thereby achieved consensus regarding the identification and description of eleven core competencies in Hospice Palliative Care. These competencies are relevant for social workers at different experience levels across care settings. They can be used to inform social work practice, as well as professional development and educational curricula in this area.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216309346596" target="_blank" rel="noreferrer">10.1177/0269216309346596</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
2010
Abernethy N
Adult
Attitudes
Backlog
Bosma H
Cadell S
Canada
Child
Clinical Competence
Delphi Technique
Educational Measurement/standards
Feron A
Health Knowledge
Hospice Care
Humans
Interprofessional Relations
Johnston M
Journal Article
Kelley ML
Nelson F
Palliative Care
Palliative Medicine
PPC Book Chapter 2011 (Kim Widger)
Practice
Professional Role
Social Work/education
Wainwright W
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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
n/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
Crocker, et al.: Reducing barriers to parent participation in pediatric palliative care research.
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Biomedical Research; Palliative Care; Patient Selection; Female; Humans; Male; Parents/psychology; Research Design/standards
Creator
An entity primarily responsible for making the resource
Siden H; Steele R; Cadell S
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216315620945" target="_blank" rel="noreferrer">10.1177/0269216315620945</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).
2016
Biomedical Research
Cadell S
Charting the territory
Female
Humans
Male
Palliative Care
Palliative Medicine
Parents/psychology
Patient Selection
Research Design/standards
Siden H
Steele R
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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.2009-0722" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2009-0722</a>
Dublin Core
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Title
A name given to the resource
Culturally-sensitive information-sharing in pediatric palliative care
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Creator
An entity primarily responsible for making the resource
Davies B; Contro N; Larson J; Widger K
Description
An account of the resource
OBJECTIVES: This study aimed to learn about experiences of Mexican American and Chinese American families who require pediatric palliative care. This article describes parents' perceptions of information-sharing by health care providers during their child's hospitalizations and at their child's death. METHODS: The study used a retrospective design of grounded theory analysis. Participants included 36 parents (26 Mexican American and 10 Chinese American) from 28 families who experienced between 6 months and 5 years before study participation the death of a child who was aged
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2009-0722" target="_blank" rel="noreferrer">10.1542/peds.2009-0722</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
2010
Backlog
Contro N
Davies B
Journal Article
Larson J
Pediatrics
Widger K
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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="https://doi.org/10.5172/hesr.2012.21.4.413" target="_blank" rel="noreferrer noopener">https://doi.org/10.5172/hesr.2012.21.4.413</a>
Dublin Core
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Title
A name given to the resource
Death and Grief On-Line: Virtual Memorialization and Changing Concepts of Childhood Death and Parental Bereavement on the Internet
Publisher
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Health Sociology Review
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Creator
An entity primarily responsible for making the resource
Mitchell LM; Stephenson PH; Cadell S; Macdonald ME
Description
An account of the resource
‘Virtual memorials’ intended to memorialize the lives of children imply significant shifts in the conceptualization of death, particularly for grieving parents. Created by parents in memory of their deceased children, on-line memorials constructed using templates reflect strong cultural beliefs about the nature of childhood deaths, grief and the development of a kind of digital afterlife. Virtual memorials create a new social value for the deceased, and shift death and bereavement from private into more public experiences. Building upon this work, we describe a kind of ‘on-line immortality’ created through virtual memorials where the virtual presence of the deceased in text and images, and practices intended to sustain a relationship with the deceased, can extend bereavement and the social lives of the dead indefinitely. While such memorials can offer solace, they also potentiate business opportunities for those hoping to create lasting customers. As such, they may also extend mourning indefinitely. This may be especially true for certain kinds of deeply problematic deaths, such as those of children.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.5172/hesr.2012.21.4.413" target="_blank" rel="noreferrer noopener">10.5172/hesr.2012.21.4.413</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).
2012
Cadell S
Health Sociology Review
Macdonald ME
Mitchell LM
Stephenson PH
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.1186/1471-2431-10-67" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/1471-2431-10-67</a>
Dublin Core
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Title
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Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: charting the territory
Publisher
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BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Child; Humans; Canada; Longitudinal Studies; Mental Disorders; Biomedical Research; PEDI Study; Metabolic Diseases; Genetic Diseases; Inborn; Biomedical Research/methods; Canada; Child; Genetic Diseases Inborn/therapy; Humans; Longitudinal Studies/methods; Mental Disorders/therapy; Metabolic Diseases/therapy
Creator
An entity primarily responsible for making the resource
Siden H; Steele R; Brant R; Cadell S; Davies B; Straatman L; Widger K; Andrews GS
Description
An account of the resource
BACKGROUND: Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the condition progresses along an uncertain trajectory towards death. Much is known about the genetics and pathophysiology of these diseases, but very little has been documented about the trajectory of symptoms for children with these conditions or the associated experience of their families. A longitudinal study design will help to close this gap in knowledge. METHODS/DESIGN: Charting the Territory is a longitudinal descriptive, correlational study currently underway with children 0-19 years who are diagnosed with progressive neurological, metabolic, or chromosomal conditions and their families. The purpose of the study is to determine and document the clinical progression of the condition and the associated bio-psychosocial-spiritual experiences of the parents and siblings age 7-18 years. Approximately 300 families, both newly diagnosed children and those with established conditions, are being recruited in six Canadian cities. Children and their families are being followed for a minimum of 18 months, depending on when they enroll in the study. Family data collection will continue after the child's death if the child dies during the study period. Data collection includes monthly parental assessment of the child's symptoms; an annual functional assessment of the child; and completion of established instruments every 6 months by parents to assess family functioning, marital satisfaction, health status, anxiety, depression, stress, burden, grief, spirituality, and growth, and by siblings to assess coping and health. Impact of participation on parents is assessed after 1 year and at the end of the study. Chart reviews are conducted at enrollment and at the conclusion of the study or at the time of the child's death. DISCUSSION: Knowledge developed from this study will provide some of the first-ever detailed descriptions of the clinical symptom trajectory of these non-curable progressive conditions and the bio-psychosocial-spiritual aspects for families, from diagnosis through bereavement. Information about developing and implementing this study may be useful to other researchers who are interested in designing a longitudinal study.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/1471-2431-10-67" target="_blank" rel="noreferrer noopener">10.1186/1471-2431-10-67</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
2010
Andrews GS
Backlog
Biomedical Research
Bmc Pediatrics
Brant R
Cadell S
Canada
Child
Davies B
Genetic Diseases
Humans
inborn
Journal Article
Longitudinal Studies
Mental Disorders
Metabolic Diseases
PEDI Study
Siden H
Steele R
Straatman L
Widger K
-
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
April 2021 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
April 2021 List
URL Address
<a href="http://doi.org/10.1186/s12904-020-00703-0" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-020-00703-0</a>
Dublin Core
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Title
A name given to the resource
Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach
Publisher
An entity responsible for making the resource available
BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Pediatric palliative care; Pediatric hospice care; Home-based care; Experience with care; Instrument development
Creator
An entity primarily responsible for making the resource
Boyden JY; Feudtner C; Deatrick JA; Widger K; LaRagione G; Lord B; Ersek M
Description
An account of the resource
Background: Many children with serious illnesses are receiving palliative and end-of-life care from pediatric palliative and hospice care teams at home (PPHC@Home). Despite the growth in PPHC@Home, no standardized measures exist to evaluate whether PPHC@Home provided in the U.S. meets the needs and priorities of children and their families. Method(s): We developed and conducted a preliminary evaluation of a family-reported measure of PPHC@Home experiences using a multi-method, multi-stakeholder approach. Our instrument development process consisted of four phases. Item identification and development (Phase 1) involved a comprehensive literature search of existing instruments, guidelines, standards of practice, and PPHC@Home outcome studies, as well as guidance from a PPHC stakeholder panel. Phase 2 involved the initial item prioiritization and reduction using a discrete choice experiment (DCE) with PPHC professionals and parent advocates. Phase 3 involved a second DCE with bereaved parents and parents currently receiving care for their child to further prioritize and winnow the items to a set of the most highly-valued items. Finally, we conducted cognitive interviews with parents to provide information about the content validity and clarity of the newly-developed instrument (Phase 4). Result(s): Items were compiled predominantly from three existing instruments. Phase 2 participants included 34 PPHC providers, researchers, and parent advocates; Phase 3 participants included 47 parents; and Phase 4 participants included 11 parents. At the completion of Phase 4, the Experiences of Palliative and Hospice Care for Children and Caregivers at Home (EXPERIENCE@Home) Measure contains 22 of the most highly-valued items for evaluating PPHC@Home. These items include "The care team treats my child's physical symptoms so that my child has as good a quality of life as possible", "I have regular access to on-call services from our care team", and "The nurses have the knowledge, skills, and experience to support my child's palliative or hospice care at home." Conclusion(s): The EXPERIENCE@Home Measure is the first known to specifically measure family-reported experiences with PPHC@Home in the U.S. Future work will include formal psychometric evaluation with a larger sample of parents, as well as evaluation of the clinical utility of the instrument with PPHC@Home teams. Copyright © 2021, The Author(s).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-020-00703-0" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00703-0</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
April 2021 List
BMC Palliative Care
Boyden JY
Deatrick JA
Ersek M
Experience with care
Feudtner C
Home-based Care
instrument development
LaRagione G
Lord B
Pediatric Hospice Care
Pediatric Palliative Care
Widger K
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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="https://doi.org/10.1016/j.pedn.2010.01.007" target="_blank" rel="noreferrer">https://doi.org/10.1016/j.pedn.2010.01.007</a>
Notes
<p>1532-8449<br />Schneider, Monica<br />Steele, Rose<br />Cadell, Susan<br />Hemsworth, David<br />MOP-79526/Canadian Institutes of Health Research/Canada<br />Journal Article<br />Research Support, Non-U.S. Gov't<br />United States<br />J Pediatr Nurs. 2011 Jun;26(3):186-99. doi: 10.1016/j.pedn.2010.01.007. Epub 2010 Feb 25.</p>
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/.
Date
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2011
Title
A name given to the resource
Differences On Psychosocial Outcomes Between Male And Female Caregivers Of Children With Life-limiting Illnesses
Publisher
An entity responsible for making the resource available
Journal Of Pediatric Nursing
Subject
The topic of the resource
Parent-child Relations; Adaptation Psychological; Adult; Aged; Caregivers/ Psychology; Child; Chronic Disease; Cost Of Illness; Fathers/ Psychology; Female; Humans; Male; Middle Aged; Mothers/ Psychology; Palliative Care/ Psychology; Sex Factors; Stress Psychological/psychology; Young Adult
Creator
An entity primarily responsible for making the resource
Schneider M; Steele R; Cadell S; Hemsworth D
Description
An account of the resource
This secondary analysis of data examined the psychosocial outcomes of meaning in caregiving, self-esteem, optimism, burden, depression, spirituality, and posttraumatic growth in 273 parents caring for children with life-limiting illnesses to (a) determine if there were gender differences and (b) identify gender-specific correlations among these outcomes. Findings suggest that significant gender differences exist. Women reported higher average scores compared with men for meaning in caregiving, depression, burden, and posttraumatic growth and lower average scores for optimism. Correlations also revealed some significant differences. Health care professionals need to be aware of gender differences and tailor their interventions appropriately.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1016/j.pedn.2010.01.007" target="_blank" rel="noreferrer">10.1016/j.pedn.2010.01.007</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).
2011
Adaptation Psychological
Adult
Aged
Cadell S
Caregivers/ Psychology
Child
Chronic Disease
Cost Of Illness
Differences On Psychosocial Outcomes Between Male And Female Caregivers Of Children With Life-limiting Illnesses
Fathers/ Psychology
Female
Hemsworth D
Humans
Journal of Pediatric Nursing
Male
Middle Aged
Mothers/ Psychology
Palliative Care/ Psychology
Parent-child Relations
Schneider M
Sex Factors
Steele R
Stress Psychological/psychology
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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.
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
Discovering strengths and growth in palliative care
Publisher
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Oxford Textbook Of Palliative Social Work
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Creator
An entity primarily responsible for making the resource
Cadell S; Shermak S; Johnston M
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).
Type
The nature or genre of the resource
Book/Book Section
2011
Book/Book Section
Cadell S
Johnston M
Oxford Textbook Of Palliative Social Work
Shermak S
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.5737/1181912x1511520" target="_blank" rel="noreferrer">http://doi.org/10.5737/1181912x1511520</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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Do we have the power to create our own future as oncology nurses?
Publisher
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Canadian Oncology Nursing Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Female; Humans; Male; Leadership; Nurse's Role; Sex Factors; Power (Psychology); Students; Nursing; Oncologic Nursing; Societies; Nursing/psychology
Creator
An entity primarily responsible for making the resource
Steele R
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.5737/1181912x1511520" target="_blank" rel="noreferrer">10.5737/1181912x1511520</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
Description
An account of the resource
2005
2005
Backlog
Canadian Oncology Nursing Journal
Female
Humans
Journal Article
Leadership
Male
Nurse's Role
Nursing
Nursing/psychology
Oncologic Nursing
Power (psychology)
Sex Factors
Societies
Steele R
Students
-
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
February 2022 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
February 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.11.017" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.11.017</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
Education in Palliative and End-of-Life Care-Pediatrics: Curriculum use and dissemination
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
palliative care; education; survey; Pediatric; training; curriculum
Creator
An entity primarily responsible for making the resource
Postier AC; Wolfe J; Hauser J; Remke SS; Baker JN; Kolste A; Dussel V; Bernadá M; Widger K; Rapoport A; Drake R; Chong PH; Friedrichsdorf SJ
Description
An account of the resource
CONTEXT: The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and dissemination project was created in 2011 in response to this widespread education and training need. Since its implementation, EPEC-Pediatrics has evolved and has been disseminated worldwide. OBJECTIVES: Assessment of past EPEC-Pediatrics participants' ("Trainers") self-reported PPC knowledge, attitudes, and skills; use of the curriculum in teaching; and feedback about the program's utility and future direction. METHODS: 2011 - 2019 survey of EPEC-Pediatrics past conference participants, using descriptive and content analyses. RESULTS: 172/786 (22% response rate) EPEC-Pediatrics past participants from 59 countries across 6 continents completed the survey. Trainers, including Master Facilitators (MFs), used the curriculum mostly to teach interdisciplinary clinicians and reported improvement in teaching ability as well as in attitude, knowledge, and skills (AKS) in two core domains of PPC: communication and pain and symptom management. The most frequently taught modules were about multimodal management of distressing symptoms. Trainers suggested adding new content to the current curriculum and further expansion in low-medium income countries. Most (71%) reported improvements in the clinical care of children with serious illnesses at their own institutions. CONCLUSION: EPEC-Pediatrics is a successful curriculum and dissemination project that improves participants' self-reported teaching skills and AKS's in many PPC core domains. Participating clinicians not only taught and disseminated the curriculum content, they also reported improvement in the clinical care of children with serious illness.
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.11.017" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.11.017</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).
2021
Baker JN
Bernadá M
Chong PH
Curriculum
Drake R
Dussel V
Education
February 2022 List
Friedrichsdorf SJ
Hauser J
Journal of Pain and Symptom Management
Kolste A
Palliative Care
Pediatric
Postier AC
Rapoport A
Remke SS
Survey
Training
Widger K
Wolfe J
-
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PedPalASCNet Member Publications
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A collection of relevant articles published by one or more of PedPalASCNet's members
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n/a
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Effect of pediatric palliative care programs on health care resource utilization and costs among children with life-threatening conditions: a systematic review of comparative studies.
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Cmaj Open
Date
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2015
Creator
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Conte T; Mitton C; Trenaman LM; Chavoshi N; Siden H
Description
An account of the resource
BACKGROUND: Pediatric palliative care is a relatively new and evolving field, and the cost of pediatric palliative care programs is unclear. We conducted a systematic review to compare inpatient health care utilization and costs among children with life-threatening conditions who have accessed a pediatric palliative care program and those who have not. METHODS: We searched MEDLINE, Embase, CINAHL and LILACS databases from January 2000 to July 2013, as well as the grey literature, for experimental or observational studies that compared pediatric palliative care programs with usual care. Outcomes of interest included hospital admissions, length of stay and health care costs. RESULTS: Of the 5193 records identified, we reviewed 109 in full and included 11 in our study. The overall quality of the studies was moderate to low. We observed mixed results for all outcomes. Compared with patients receiving usual care, fewer patients in the palliative care group had hospital admissions and fewer of those with cancer had planned hospital admissions. In contrast, no effects were observed regarding the overall number of hospital, emergency or outpatient admissions. Conflicting results were observed with regards to critical care utilization. Studies showed a trend toward shorter lengths of stay in hospital in the palliative care group. However, a single study that also considered inpatient time in hospice facilities found an increase in total length of stay, which showed a shift in the setting of health care utilization. We observed no conclusive trend in the effects on cost. INTERPRETATION: Evidence suggests that pediatric palliative care programs may result in a shift of utilization to other health care settings beyond hospital care. These settings should be considered when measuring resource utilization and costs.
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<a href="http://doi.org/10.9778/cmajo.20140044" target="_blank" rel="noreferrer">10.9778/cmajo.20140044</a>
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2015
Chavoshi N
Cmaj Open
Conte T
Mitton C
Siden H
Trenaman LM
-
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Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.1093/pch/pxaa031" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1093/pch/pxaa031</a>
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Title
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Efficacy and safety of paediatric medicinal cannabis use: A scoping review
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Paediatrics and Child Health
Date
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2021
Subject
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Cannabidiol; Cannabis; Drug-resistant epilepsy; Medicinal marijuana; Scoping review; Tetrahydrocannabinoid; Medicinal Cannabis
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Pawliuk C; Chau B; Rassekh SR; McKellar T; Siden H
Description
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INTRODUCTION: The use of medicinal cannabis in the paediatric age group is increasing despite the lack of evidence for its efficacy or safety. OBJECTIVE: To map the available evidence on the efficacy and safety of medicinal cannabis in children and adolescents. METHODS: We conducted a scoping review and searched six electronic databases and grey literature. A study was eligible for inclusion when it investigated the efficacy or safety of medicinal cannabis for any condition, more than half of the participants were 0 to 18 years old, and had any study design except single case reports. RESULTS: We included 36 studies in our final analysis, 32 of which investigated the efficacy or safety of cannabis in treatment-resistant epilepsy. The remaining 4 studies examined patients with cancer, dysautonomia, Epidermolysis Bullosa, and motor disorders. CONCLUSIONS: There is a lack of evidence on the efficacy and safety of medicinal cannabis in most paediatric conditions.
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<a href="http://doi.org/10.1093/pch/pxaa031" target="_blank" rel="noreferrer noopener">10.1093/pch/pxaa031</a>
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2021
Cannabidiol
Cannabis
Chau B
Drug-resistant epilepsy
McKellar T
Medicinal Cannabis
Medicinal marijuana
Paediatrics And Child Health
Pawliuk C
Rassekh SR
Scoping review
Siden H
Tetrahydrocannabinoid
-
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Title
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May 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
May 2018 List
URL Address
<a href="http://doi.org/http://www.mdpi.com/2227-9067/5/3/32" target="_blank" rel="noreferrer noopener">http://doi.org/http://www.mdpi.com/2227-9067/5/3/32</a>
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Title
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Emerging Methodologies in Pediatric Palliative Care Research: Six Case Studies
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Children
Date
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2018
Creator
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Nelson K; Feinstein J; Gerhardt C; Rosenberg A; Widger K; Faerber J; Feudtner C
Description
An account of the resource
Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our own areas of research and the novel methods we have identified to target them. Specifically, we discuss potential approaches to: assessing symptoms among nonverbal children, evaluating medical interventions, identifying and treating problems related to polypharmacy, addressing missing data in longitudinal studies, evaluating longer-term efficacy of PPC interventions, and monitoring for inequities in PPC service delivery.
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).
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<a href="http://doi.org/10.3390/children5030032" target="_blank" rel="noreferrer noopener">10.3390/children5030032</a>
2018
Children
Faerber J
Feinstein J
Feudtner C
Gerhardt C
May 2018 List
Nelson K
Rosenberg A
Widger K
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
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A collection of relevant articles published by one or more of PedPalASCNet's members
Text
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Citation List Month
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1053/jpon.2002.127226" target="_blank" rel="noreferrer noopener">http://doi.org/10.1053/jpon.2002.127226</a>
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Title
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End of life in pediatric oncology: how clinical practice leads to research
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Journal Of Pediatric Oncology Nursing
Date
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2002
Subject
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Biomedical Research; Evidence-based Medicine; Oncology Nursing/td [trends]; Pediatrics/td [trends]; Child; Humans; Research Design
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Pritchard M; Davies B
Description
An account of the resource
In pediatric oncology nursing, and across practice disciplines in general, clinical research serves as the cornerstone for improving patient care. Historically, advances made in the care and cure of childhood cancer have stemmed directly from clinical research. The developments of new research questions are varied in their origin--some questions are based on previous work that leads logically to the next question, some are based on a clinical problem that requires more immediate attention, and then there are those that arise from an individual clinical experience. This last category provides clinicians with a poignant reason to search for answers on how to provide the most optimal care for all future patients. As the number of advanced practice nurses in pediatric oncology increases, there is the likelihood of an increased pursuit of clinical research. This article describes how one clinician's experience with dying children resulted in the pursuit of answers to clinical research questions. By reflecting on clinical practice and incorporating our practice in the development of research questions, we can improve the quality of care provided to all children with cancer. Copyright 2002 by Association of Pediatric Oncology Nurses
Identifier
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<a href="http://doi.org/10.1053/jpon.2002.127226" target="_blank" rel="noreferrer noopener">10.1053/jpon.2002.127226</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).
2002
Biomedical Research
Child
Davies B
Evidence-based Medicine
Humans
Journal Of Pediatric Oncology Nursing
Oncology 2017 List
Oncology Nursing/td [trends]
Pediatrics/td [trends]
Pritchard M
Research Design
-
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Title
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April 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
April 2018 List
URL Address
<a href="http://doi.org/10.1007/s11060-018-2781-0" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s11060-018-2781-0</a>
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Title
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End-of-life care of children with diffuse intrinsic pontine glioma
Publisher
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Journal of Neuro-Oncology
Date
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2018
Subject
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Palliative care; terminal care; Child; End-of-life care; Only Child; Palliative Care; Pediatric oncology; Terminal Care; child; Diffuse intrinsic pontine glioma (DIPG); Glioma
Creator
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Hasan F; Weingarten K; Rapoport A; Bouffet E; Bartels U
Description
An account of the resource
The end-of-life management of children with diffuse intrinsic pontine glioma (DIPG) is challenging. Families cope with debilitating symptoms and make complex decisions regarding their child's care. However, there is little evidence guiding palliative care provision for these children. Our objective was to describe the dying trajectory of children with DIPG, their symptoms, the care they require and the end-of-life decisions made for them. This retrospective cohort study analyzed the end-of-life care of 41 consecutive patients with DIPG who died between January 2001 and June 2010. All patients died of disease progression, experiencing a significant symptom burden prior to death. Despite this, the majority of patient days at the end of life were spent at home. However, 60% of patients were hospitalized at least once in their final 3 months, often close to the time of death. A wide range of healthcare professionals were involved, providing a range of medicinal/non-medicinal interventions. Chemotherapy was given to 30% of patients in their final month. Thirty of 33 families approached (91%) agreed to a "Do not resuscitate" order. A small subset of families opted for intensive treatment towards the end of life including cardiopulmonary resuscitation, intensive care admission and mechanical ventilation. Children with DIPG have complex needs and require intensive multidisciplinary support. This paper describes the end-of-life choices made for these children and discusses how these choices influence our institutional model for palliative care. We believe this approach will be useful to clinicians caring for similar patients.
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<a href="http://doi.org/10.1007/s11060-018-2781-0" target="_blank" rel="noreferrer noopener">10.1007/s11060-018-2781-0</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).
2018
April 2018 List
Bartels U
Bouffet E
Child
Diffuse Intrinsic Pontine Glioma (DIPG)
End-of-life Care
Glioma
Hasan F
Journal of Neuro-Oncology
Only Child
Palliative Care
Pediatric Oncology
Rapoport A
Terminal Care
Weingarten K
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1542/peds.2020-003780" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2020-003780</a>
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Title
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End-of-Life Childhood Cancer Research: A Systematic Review
Publisher
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Pediatrics
Date
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2021
Subject
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Oncology
Creator
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Hasan F; Widger K; Sung L; Wheaton L
Description
An account of the resource
CONTEXT: Children with incurable cancer may participate in research studies at the end of life (EOL). These studies create knowledge that can improve the care of future patients. OBJECTIVE: To describe stakeholder perspectives regarding research studies involving children with cancer at the EOL by conduct of a systematic review. DATA SOURCES: We used the following data sources: Ovid Medline, Embase, the Cumulative Index to Nursing and Allied Health Literature, PsycINFO, Web of Science, and ProQuest (inception until August 2020). STUDY SELECTION: We selected 24 articles published in English that examined perceptions or experiences of research participation for children with cancer at the EOL from the perspectives of children, parents, and health professionals (HPs). DATA EXTRACTION: Two authors independently extracted data, assessed study quality, and performed thematic analysis and synthesis. RESULTS: Eight themes were identified: (1) seeking control; (2) faith, hope, and uncertainty; (3) being a good parent; (4) helping others; (5) barriers and facilitators; (6) information and understanding; (7) the role of HPs in consent and beyond; and (8) involvement of the child in decision-making. LIMITATIONS: Study designs were heterogeneous. Only one study discussed palliative care research. CONCLUSIONS: Some families participate in EOL research seeking to gain control and sustain hope, despite uncertainty. Other families choose against research, prioritizing quality of life. Parents may perceive research participation as the role of a “good parent” and hope to help others. HPs have positive views of EOL research but fear that parents lack understanding of the purpose of studies and the likelihood of benefit. We identified barriers to research participation and informed consent.
Identifier
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<a href="http://doi.org/10.1542/peds.2020-003780" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-003780</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).
2021
2021 Special Edition - Oncology
Hasan F
Oncology
Pediatrics
Sung L
Wheaton L
Widger K
-
Dublin Core
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Title
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Special Edition #1 2022 List
Text
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Citation List Month
Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1080/15524256.2019.1703877" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/15524256.2019.1703877</a>
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Title
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Engaging Fathers in Pediatric Palliative Care Research
Publisher
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Journal of Social Work in End-of-Life & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Caregiver; child; child health; controlled study; father; health care personnel; interview; male; palliative therapy; pediatrics; perception; qualitative research; wellbeing
Creator
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Nicholas D; Beaune L; Belletrutti M; Blumberg J; Ing S; Rapoport A; Barrera M
Description
An account of the resource
Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A secondary mixed-methods evaluation design guided examination of interview and focus group data as well as field notes from a qualitative study that examined the experiences and support needs of fathers of children with a life-limiting illness. Facilitators of paternal participation in the study consisted of: fathers' desire to gain from study participation either for themselves or others, perception of the study's importance, sense of appreciation for the study's focus on fathers and an established relationship with recruiting health care providers. Barriers to study participation included: recruiting health care providers' appraisal of fathers' lack of well-being, bereaved fathers' self-reported poor coping and the inability to locate and contact fathers, particularly after a child's death. Strategies for improving the engagement of fathers into research entailed: educating recruitment personnel, designing "father-focused" studies, communicating the value of the research to recruitment personnel and potential participants, and ensuring that child health records are accurate and include fathers' contact information.
Identifier
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<a href="http://doi.org/10.1080/15524256.2019.1703877" target="_blank" rel="noreferrer noopener">10.1080/15524256.2019.1703877</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).
2020
2022 Special Edition 1 - Parent Perspectives
Barrera M
Beaune L
Belletrutti M
Blumberg J
Caregiver
Child
Child Health
Controlled Study
Father
Health Care Personnel
Ing S
Interview
Journal of social work in end of life & palliative care.
Male
Nicholas D
Palliative Therapy
Pediatrics
Perception
Qualitative Research
Rapoport A
Wellbeing
-
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Title
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PedPalASCNet Member Publications
Subject
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A collection of relevant articles published by one or more of PedPalASCNet's members
Text
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Citation List Month
n/a
URL Address
<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403282/" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403282/</a>
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Title
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Enhancing the quality of palliative care for children with cancer: A nation-wide train-the-trainer educational initiative
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Paediatrics & Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Creator
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Widger K; Bouffet E; Friedrichsdorf S; Greenberg M; Husain A; Liben S; Pole JD; Siden H; Whitlock J; Wolfe J; Rapoport A
Description
An account of the resource
It is now widely endorsed that palliative care (PC) principles should be integrated into the routine care of all children diagnosed with cancer, not only those at end of life (1). However, paediatric health professionals report receiving little training in PC (2), and bereaved parents continue to report suboptimal care throughout the disease course (3,4). It is crucial that all health professionals caring for children with cancer receive comprehensive education about evidence-based PC and support to implement new knowledge. To achieve these goals, we will implement a national ‘roll-out’ of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a ‘train-the-trainer’ model.
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<a href="https://doi.org/10.1093/pch/20.3.157" target="_blank" rel="noreferrer">10.1093/pch/20.3.157</a>
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2015
Bouffet E
Friedrichsdorf S
Greenberg M
Husain A
Liben S
Paediatrics & Child Health
Pole JD
Rapoport A
Siden H
Whitlock J
Widger K
Wolfe J
-
Dublin Core
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Title
A name given to the resource
June 2022 List
Text
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Citation List Month
June 2022 List
URL Address
<a href="http://doi.org/10.12927/hcq.2022.26778" target="_blank" rel="noreferrer noopener">http://doi.org/10.12927/hcq.2022.26778</a>
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Title
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Ensuring Equity and Inclusion in Virtual Care Best Practices for Diverse Populations of Youth with Chronic Pain
Publisher
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Healthcare Quarterly (Toronto, Ontario)
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Adolescent; Canada; Chronic Pain; COVID-19; Humans; Pandemics
Creator
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Birnie KA; Killackey T; Backlin G; Gavin F; Harris C; Jordan I; Kim L;Marianayagam J; Swidrovich J; Lalonde C; Tunji-Ajayi L; Oberlander T; Kirby-Allen M; Lambert S; Siden H; Swidrovich J; Noel M; Lalloo C; Stinson J
Description
An account of the resource
Poor access to care is a top patient-oriented research priority for youth with chronic pain in Canada, and the COVID-19 pandemic has exacerbated these concerns. Our patient-oriented project team engaged with marginalized and racialized youth with chronic pain (Black youth with sickle cell disease, Indigenous youth and youth with complex medical needs) and their families to ensure that best practice recommendations for virtual care are inclusive and equitable. Input provided through virtual round-table discussions improved recommendations for leveraging, implementing and selecting best platforms for virtual care for youth with chronic pain and identified new gaps for future research, practice and policy change.
Identifier
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<a href="http://doi.org/10.12927/hcq.2022.26778" target="_blank" rel="noreferrer noopener">10.12927/hcq.2022.26778</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).
2022
Adolescent
April 2022 List
Backlin G
Birnie KA
Canada
Chronic Pain
COVID-19
Gavin F
Harris C
Healthcare Quarterly (Toronto, Ontario)
Humans
Jordan I
Killackey T
Kim L
Kirby-Allen M
Lalloo C
Lalonde C
Lambert S
Marianayagam J
Noel M
Oberlander T
Pandemics
Siden H
Stinson J
Swidrovich J
Tunji-Ajayi L
-
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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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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://www.ncbi.nlm.nih.gov/pmc/articles/PMC2539002/" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2539002/</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
Ensuring pain relief for children at the end of life
Publisher
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Pain Research & Management : The Journal Of The Canadian Pain Society = Journal De La Societe Canadienne Pour Le Traitement De La Douleur
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Female; Humans; Male; adolescent; Preschool; infant; Palliative Care/methods; Analgesia/methods; Pain Measurement/methods; Terminal Care/methods; Pain/etiology/psychology/therapy
Creator
An entity primarily responsible for making the resource
Gregoire MC; Frager G
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
Description
An account of the resource
2006
2006
Adolescent
Analgesia/methods
Backlog
Child
Female
Frager G
Grégoire MC
Humans
Infant
Journal Article
Male
Pain Measurement/methods
Pain Research & Management : The Journal Of The Canadian Pain Society = Journal De La Societe Canadienne Pour Le Traitement De La Douleur
Pain/etiology/psychology/therapy
Palliative Care/methods
Preschool
Terminal Care/methods
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.1155/2000/767058" target="_blank" rel="noreferrer">http://doi.org/10.1155/2000/767058</a>
Dublin Core
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Title
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Evaluating treatment outcome in an interdisciplinary pediatric pain service
Publisher
An entity responsible for making the resource available
Pain Research And Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Treatment Outcome; Pain; Therapeutics; Children
Creator
An entity primarily responsible for making the resource
Bennett S; Chambers C; Bellows D; Court C; Huntsman E; Montgomery C; Oberlander T; Sheriff M; Siden H
Description
An account of the resource
OBJECTIVE: To provide descriptive data evaluating outcome and treatment satisfaction among former pediatric patients and their parents seen in an interdisciplinary treatment program for complex pain syndromes. DESIGN: Retrospective telephone interview. SETTING: Pediatric academic health care centre. SUBJECTS AND METHODS: A semistructured interview designed for this study was administered by phone with 24 former patients (mean age 15.63 years) and parents, seen over the previous three years in the Complex Pain Consultation Service. Participants provided both qualitative and quantitative information about pre- and post-treatment levels of pain and functioning, achievement of treatment goals and satisfaction with the treatment program. RESULTS: Findings indicated significantly lower frequency and intensity of pain, as rated by patients, when current pain levels were compared with recalled pretreatment levels. As well, improvements were reported in strategies for managing pain and participation in regular activities of daily living. Satisfaction with the team treatment was generally very high, and most felt that their goals were partially to completely met. Child and parent ratings of outcome and satisfaction were consistent. CONCLUSIONS: These descriptive data provide preliminary support for the application of an interdisciplinary model to treating disabling complex pain syndromes in children and youths.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1155/2000/767058" target="_blank" rel="noreferrer">10.1155/2000/767058</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
2000
Backlog
Bellows D
Bennett S
Chambers C
Children
Court C
Huntsman E
Journal Article
Montgomery C
Oberlander T
Pain
Pain Research And Management
Sheriff M
Siden H
Therapeutics
Treatment Outcome
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.1186/s12887-022-03632-4" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12887-022-03632-4</a>
Dublin Core
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Title
A name given to the resource
Evaluation of children with severe neurological impairment admitted to hospital with pain and irritability
Publisher
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BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Adolescent; Child; Child, Preschool; Children; Clinical pathway; Emergency Service, Hospital; Hospitalization; Hospitals, Pediatric; Humans; Infant; Infant, Newborn; Pain; Retrospective Studies; Severe neurological impairment; PIUO
Creator
An entity primarily responsible for making the resource
Fishman I; Siden H; Vadeboncoeur C
Description
An account of the resource
BACKGROUND: Pain is the most common symptom reported by caregivers of children with severe neurological impairment (SNI), a descriptive term for children with disorders affecting the neurological system across multiple domains. In SNI, cognition, communication, and motor skills are impaired and other organ systems are impacted. Pain is difficult to identify and treat in children with SNI because of communication impairment. When a clear cause of pain is not determined, the term "Pain and Irritability of Unknown Origin (PIUO)" is used to describe pain-like behaviours. This study explores the clinical care received by children with SNI admitted to hospital after presenting to the emergency department of a tertiary pediatric hospital with pain or irritability. Findings are compared to the approach suggested in the PIUO pathway, an integrated clinical pathway for identifying and treating underlying causes of pain and irritability in children with complex conditions and limited communication. METHODS: Retrospective chart review of children (age 0 to 18 years inclusive) with diagnoses compatible with SNI presenting with pain, irritability, and/or unexplained crying that required hospitalization between January 1st, 2019 and December 31st, 2019. Descriptive statistics were used to analyze the clinical care received by children in whom a source of pain was identified or not. In children for whom no cause of pain was identified, investigations completed were compared to the PIUO pathway. RESULTS: Eight hospital admissions of six unique children were included for data analysis. A cause for pain and irritability was identified and resolved in three patients. In children with PIUO, there were gaps in history taking, physical examination, and investigations that might have allowed a cause of pain and irritability to be found. Pain was assessed using the r-FLACC pain scale and varying medications for pain/irritability were given during each hospital admission. CONCLUSION: Children with SNI admitted to a tertiary pediatric hospital did not undergo a standardized approach to identifying a cause of pain and irritability. Future efforts should explore the effectiveness of the PIUO pathway, a standardized approach to reducing and resolving pain in children with SNI.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12887-022-03632-4" target="_blank" rel="noreferrer noopener">10.1186/s12887-022-03632-4</a>
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).
2022
Adolescent
Bmc Pediatrics
Child
Child, Preschool
Children
Clinical pathway
Emergency Service, Hospital
Fishman I
Hospitalization
Hospitals, Pediatric
Humans
Infant
Infant, Newborn
Pain
PIUO
Retrospective Studies
severe neurological impairment
Siden H
Vadeboncoeur C
-
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
February 2019 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
February 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.416" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.416</a>
Dublin Core
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Title
A name given to the resource
Evaluation of End-of-Life Care Programs at Emily's House Children's Hospice
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
pain; death; dyspnea; major clinical study; neoplasm; hospice; seizure; conference abstract; human; child; female; male; diagnosis; terminal care; patient care
Creator
An entity primarily responsible for making the resource
Ross S; Daffern K; Widger K; Rapoport A; Salminen R
Description
An account of the resource
Background: Emily's House Children's Hospice (EH) located in Toronto, Canada provides respite, transitional care, symptom management, and end-of-life (EoL) care. Children with serious medical conditions and their families may access any program over months or years but some only access EoL care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.416" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.416</a>
2018
Child
conference abstract
Daffern K
Death
Diagnosis
Dyspnea
February 2019 List
Female
Hospice
Human
Journal of Pain and Symptom Management
Major Clinical Study
Male
Neoplasm
Pain
Patient Care
Rapoport A
Ross S
Salminen R
Seizure
Terminal Care
Widger K
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.1188/07.onf.1113-1118" target="_blank" rel="noreferrer">http://doi.org/10.1188/07.onf.1113-1118</a>
Dublin Core
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Title
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Everyday struggling to survive: Experiences of the urban poor living with advanced cancer.
Publisher
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Oncology Nursing Forum
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
ONS Excellence in Cancer Nursing Research Award
Creator
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Hughes A; Gudmundsdottir M; Davies B
Identifier
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<a href="http://doi.org/10.1188/07.onf.1113-1118" target="_blank" rel="noreferrer">10.1188/07.onf.1113-1118</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
Description
An account of the resource
2007
2007
Backlog
Davies B
Gudmundsdottir M
Hughes A
Journal Article
Oncology Nursing Forum
ONS Excellence in Cancer Nursing Research Award
-
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/10.3233/WOR-141957" target="_blank" rel="noreferrer">http://doi.org/10.3233/WOR-141957</a>
Dublin Core
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Title
A name given to the resource
Excluding parental grief: A critical discourse analysis of bereavement accommodation in Canadian labour standards
Publisher
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Work (reading, Mass.)
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
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Macdonald ME; Kennedy K; Moll S; Pineda C; Mitchell LM; Stephenson PH; Cadell S
Description
An account of the resource
BACKGROUND: Grief following child loss is profoundly destabilizing with serious long-term repercussions for bereaved parents. Employed parents may need time away from work to deal with this loss.OBJECTIVE: The purpose of this study was to reflect upon the ways labour policies and practices respond to parental bereavement.METHODS: Critical discourse analysis was used to examine labour policies and practices related to employment leave for bereaved parents in Canada. Results were compared to international labour standards.RESULTS: Universally, employment policies provide only for the practical issues of bereavement. Commonly, leave is three days, unpaid, and meant to enable ceremonial obligations. Policies do not acknowledge the long-term suffering caused by grief or the variable intensity of different kinds of loss. Managerial, moral, normative and neoliberal values embedded in these policies efface the intensely personal experience of grief, thereby leaving employees at risk for serious health and workplace safety issues.CONCLUSIONS: Bereavement leave currently understands grief as a generic, time-limited state with instrumental tasks and ceremonial obligations. In contrast, research characterizes responses to child loss as intense, highly personal experiences for which healing and recovery can take years. This disconnect is especially problematic when viewed through the lens of employee wellbeing, reintegration and workplace productivity.
2014-09
Identifier
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<a href="http://doi.org/10.3233/WOR-141957" target="_blank" rel="noreferrer">10.3233/WOR-141957</a>
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).
Type
The nature or genre of the resource
Journal Article
2014
Backlog
Cadell S
Journal Article
Kennedy K
Macdonald ME
Mitchell LM
Moll S
Pineda C
Stephenson PH
Work (reading, Mass.)
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.12968/ijpn.2002.8.9.10687" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2002.8.9.10687</a>
Dublin Core
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Title
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Experiences of families in which a child has a prolonged terminal illness: modifying factors.
Publisher
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International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Child; Female; Humans; Male; Family; Communication; Longitudinal Studies; Non-U.S. Gov't; Research Support; Parents/psychology; Terminal Care/psychology; Neurodegenerative Diseases/nursing
Creator
An entity primarily responsible for making the resource
Steele R
Description
An account of the resource
A significant proportion of children requiring palliative care have neurodegenerative life-threatening illnesses (NLTIs). While most of their care is provided at home by their families over many years, there is a paucity of research examining families' experiences when a child with an NLTI is dying at home. In this grounded theory study, data were collected from eight families through observations and audiotaped interviews. Families moved through a process of 'navigating uncharted territory' as they lived with their dying child. The strategies that families used to manage this phenomenon were influenced by four intervening conditions that reflected the broader structural context of the phenomenon; relationships with healthcare providers, availability of information, gender differences, and communication between parents. Each condition facilitated or constrained the strategies that families were able to use. Implications for research, education and practice are discussed.
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2002.8.9.10687" target="_blank" rel="noreferrer">10.12968/ijpn.2002.8.9.10687</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
2002
Backlog
Child
Communication
Family
Female
Humans
International Journal of Palliative Nursing
Journal Article
Longitudinal Studies
Male
Neurodegenerative Diseases/nursing
Non-U.S. Gov't
Parents/psychology
Research Support
Steele R
Terminal Care/psychology
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.1097/00002820-199810000-00001" target="_blank" rel="noreferrer">http://doi.org/10.1097/00002820-199810000-00001</a>
Dublin Core
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Title
A name given to the resource
Experiences of mothers in five countries whose child died of cancer
Publisher
An entity responsible for making the resource available
Cancer Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
1998
Subject
The topic of the resource
Child; Female; Humans; Male; United States; Palliative Care; Adult; Canada; Mother-Child Relations; Middle Aged; Attitude to Death; Cross-Cultural Comparison; adolescent; Preschool; bereavement; infant; Greece; Norway; Oncologic Nursing; Hong Kong; Neoplasms/nursing/psychology/therapy
Creator
An entity primarily responsible for making the resource
Davies B; Deveau E; deVeber B; Howell D; Martinson I; Papadatou D; Pask E; Stevens M
Description
An account of the resource
Although increasing attention is being focused on the emotional aspects of caring for dying children and their families, few research reports concentrate on the experiences of mothers, particularly in different countries. This article describes the findings of an exploratory, descriptive study that investigated the experiences of mothers from five different countries who each had a child die from cancer in the past 6 months. Principal investigators, members of the International Work Group on Death, Dying, and Bereavement, conducted semistructured interviews with 21 mothers in their own countries. No culturally related differences were noted among mothers, and the mothers' recall of their experiences are more similar than different. All mothers, irrespective of country, described similar reactions to the diagnosis, management of the end-stage illness, and challenge of coping with bereavement. Lessons learned from this project provide suggestions for future research across countries.
1998
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00002820-199810000-00001" target="_blank" rel="noreferrer">10.1097/00002820-199810000-00001</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
1998
Adolescent
Adult
Attitude To Death
Backlog
Bereavement
Canada
Cancer Nursing
Child
Cross-cultural Comparison
Davies B
Deveau E
deVeber B
Female
Greece
Hong Kong
Howell D
Humans
Infant
Journal Article
Male
Martinson I
Middle Aged
Mother-child Relations
Neoplasms/nursing/psychology/therapy
Norway
Oncologic Nursing
Palliative Care
Papadatou D
Pask E
Preschool
Stevens M
United States
-
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
February 2019 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
February 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.042" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.042</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
Exploring Resident Physicians' Experiences Practicing in Pediatric Palliative Care: A Hermeneutic Method of Inquiry
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
death; grief; semi structured interview; pediatrics; palliative therapy; student; personal experience; resident; medical education; data analysis; genetic transcription; conference abstract; human; child; controlled study; perception; guilt; qualitative research; phenomenology; chronic patient; rotation
Creator
An entity primarily responsible for making the resource
Johnson A; Siden H; Charles G
Description
An account of the resource
Objectives: The experiences of medical residents during training in pediatric palliative care has recently become an area of focus within medical education literature. Residents' medical knowledge, skill development, and comfort in clinical practice in palliative care have all been investigated within recent studies. However, the current body of literature in this area is limited and under-developed as it has neglected the human experience of caring for children with life-limiting diseases. The primary objective of this study is to widen the understanding of pediatric residents who have completed training in pediatric palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.042" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.042</a>
2018
Charles G
Child
Chronic Patient
conference abstract
Controlled Study
Data Analysis
Death
February 2019 List
genetic transcription
Grief
Guilt
Human
Johnson A
Journal of Pain and Symptom Management
Medical Education
Palliative Therapy
Pediatrics
Perception
Personal Experience
Phenomenology
Qualitative Research
Resident
Rotation
Semi Structured Interview
Siden H
Student
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.1097/njh.0b013e3181aada87" target="_blank" rel="noreferrer">http://doi.org/10.1097/njh.0b013e3181aada87</a>
Dublin Core
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Title
A name given to the resource
Exploring the Supportive Care Model as a framework for pediatric palliative care
Publisher
An entity responsible for making the resource available
Journal Of Hospice & Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Creator
An entity primarily responsible for making the resource
Widger K; Steele R; Davies B; Oberle K
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/njh.0b013e3181aada87" target="_blank" rel="noreferrer">10.1097/njh.0b013e3181aada87</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
Description
An account of the resource
2009
2009
Backlog
Davies B
Journal Article
Journal Of Hospice & Palliative Nursing
Oberle K
Steele R
Widger K