1
40
13
-
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Title
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November 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.
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November 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2017.0532</a>
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Title
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National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on Pediatric Palliative Care
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Journal of Palliative Medicine
Date
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2018
Subject
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cancer palliative therapy;childhood cancer;medical education;Pediatrics;Advance care planning;article;Canada;Child;clinical practice;health care quality;health practitioner;Human;professional knowledge;quality of life;self care;tertiary care center;total quality management
Creator
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Widger K;Wolfe J;Friedrichsdorf S;Pole JD;Brennenstuhl S;Liben S;Greenberg M;Bouffet E;Siden H;Husain A;Whitlock JA;Leyden M;Rapoport A
Description
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Abstract Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC?-Pediatrics) curriculum on the following: (1) knowledge dissemination; (2) health professionals' knowledge; (3) practice change; and (4) quality of PPC. Design: An integrated knowledge translation approach was used with pre-/posttest evaluation of care quality. Setting/Subjects/Measurements: Regional Teams of 3?6 health professionals based at 15 pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who taught the curriculum to health professionals (learners) and implemented quality improvement (QI) projects. Trainers recorded the number of learners at each education session and progress on QI goals. Learners completed knowledge surveys. Care quality was assessed through surveys with a cross-sectional sample of children with cancer and their parents about symptoms, quality of life, and care quality plus reviews of deceased patients' health records. Results: Seventy-two Trainers taught 3475 learners; the majority (96.7%) agreed that their PPC knowledge improved. In addition, 10/15 sites achieved practice change QI goals. The only improvements in care quality were an increased number of days from referral to PPC teams until death by a factor of 1.54 (95% confidence interval [CI]?=?1.17?2.03) and from first documentation of advance care planning until death by a factor of 1.50 (95% CI?=?1.06?2.11), after adjusting for background variables. Conclusion: While improvements in care quality were only seen in two areas, our approach was highly effective in achieving knowledge dissemination, knowledge improvement, and practice change goals.
Identifier
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<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0532</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
Advance Care Planning
Article
Bouffet E
Brennenstuhl S
Canada
Cancer Palliative Therapy
Child
Childhood Cancer
Clinical Practice
Friedrichsdorf S
Greenberg M
Health Care Quality
health practitioner
Human
Husain A
Journal of Palliative Medicine
Leyden M
Liben S
Medical Education
November 2018 List
Pediatrics
Pole JD
professional knowledge
Quality Of Life
Rapoport A
Self Care
Siden H
tertiary care center
Total Quality Management
Whitlock JA
Widger K
Wolfe J
-
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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September 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
October 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2017.0532</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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National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on 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
2018
Creator
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Widger K; Wolfe J; Friedrichsdorf S; Pole JD; Brennenstuhl S; Liben S; Greenberg M; Bouffet E; Siden H; Husain A; Whitlock JA; Leyden M; Rapoport A
Description
An account of the resource
Abstract Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC?-Pediatrics) curriculum on the following: (1) knowledge dissemination; (2) health professionals' knowledge; (3) practice change; and (4) quality of PPC. Design: An integrated knowledge translation approach was used with pre-/posttest evaluation of care quality. Setting/Subjects/Measurements: Regional Teams of 3?6 health professionals based at 15 pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who taught the curriculum to health professionals (learners) and implemented quality improvement (QI) projects. Trainers recorded the number of learners at each education session and progress on QI goals. Learners completed knowledge surveys. Care quality was assessed through surveys with a cross-sectional sample of children with cancer and their parents about symptoms, quality of life, and care quality plus reviews of deceased patients' health records. Results: Seventy-two Trainers taught 3475 learners; the majority (96.7%) agreed that their PPC knowledge improved. In addition, 10/15 sites achieved practice change QI goals. The only improvements in care quality were an increased number of days from referral to PPC teams until death by a factor of 1.54 (95% confidence interval [CI]?=?1.17?2.03) and from first documentation of advance care planning until death by a factor of 1.50 (95% CI?=?1.06?2.11), after adjusting for background variables. Conclusion: While improvements in care quality were only seen in two areas, our approach was highly effective in achieving knowledge dissemination, knowledge improvement, and practice change goals.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0532</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.
2018
Bouffet E
Brennenstuhl S
Friedrichsdorf S
Greenberg M
Husain A
Journal of Palliative Medicine
Leyden M
Liben S
October 2018 List
Pole JD
Rapoport A
September 2018 List
Siden H
Whitlock JA
Widger K
Wolfe J
-
Dublin Core
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Title
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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
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/10.1016/s0140-6736(07)61203-3" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0140-6736(07)61203-3</a>
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Title
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Paediatric palliative care: Challenges and emerging ideas.
Publisher
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The Lancet
Date
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2007
Creator
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Liben S; Papadatou D; Wolfe J
Identifier
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<a href="http://doi.org/10.1016/s0140-6736(07)61203-3" target="_blank" rel="noreferrer">10.1016/s0140-6736(07)61203-3</a>
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Type
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Journal Article
Description
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2007
2007
Backlog
Journal Article
Liben S
Papadatou D
The Lancet
Wolfe J
-
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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
Backlog
URL Address
<a href="http://doi.org/10.1016/S0140-6736(07)61203-3" target="_blank" rel="noreferrer">http://doi.org/10.1016/S0140-6736(07)61203-3</a>
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Title
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Paediatric palliative care: Challenges and emerging ideas.
Publisher
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Lancet
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
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Longitudinal Studies
Creator
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Liben S; Papadatou D; Wolfe J
Description
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Paediatric palliative care is an emerging subspecialty that focuses on achieving the best possible quality of life for children with life-threatening conditions and their families. To achieve this goal, the individuals working in this field need to: clearly define the population served; better understand the needs of children with life-threatening conditions and their families; develop an approach that will be appropriate across different communities; provide care that responds adequately to suffering; advance strategies that support caregivers and health-care providers; and promote needed change by cultivating educational programmes. Despite these challenges, advances in paediatric palliative care have been achieved in a short period of time; we expect far greater progress as the field becomes more formalised and research networks are established.
2007
Identifier
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<a href="http://doi.org/10.1016/S0140-6736(07)61203-3" target="_blank" rel="noreferrer">10.1016/S0140-6736(07)61203-3</a>
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Type
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Journal Article
2007
Backlog
Journal Article
Lancet
Liben S
Longitudinal Studies
Papadatou D
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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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.2004-1980" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2004-1980</a>
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Title
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Parental perspectives on hospital staff members' acts of kindness and commemoration after a child's death
Publisher
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Pediatrics
Date
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2005
Subject
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Child; Humans; Intensive Care Units; Professional-Family Relations; Death; Hospitals; Pediatric; Non-U.S. Gov't; Research Support; bereavement; Parents/psychology; social support; Hospital; Personnel
Creator
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Macdonald ME; Liben S; Carnevale FA; Rennick J; Wolf SL; Meloche D; Cohen SR
Description
An account of the resource
OBJECTIVES: Acts of kindness and commemoration by staff members often follow the death of a patient. Acts include attending funerals, sending sympathy cards, sending cards on birthdays/anniversaries, telephoning/visiting family homes, and attending memorial services. This study explores the significance of these acts for bereaved parents. METHODS: Twelve parents whose children died in the ICU of a tertiary care pediatric hospital were interviewed, to explore their experiences of the death. Investigators reviewed transcripts and observational field notes. Multidisciplinary team triangulation was used to corroborate themes, with cross-case analysis. RESULTS: Three themes emerged regarding parental experiences of staff members' acts, ie, (1) parents placed great importance on the hospital's memorial service and on staff members' presence at the service; (2) parents found it difficult to return to the hospital after the child's death but all attended the memorial service, finding some closure in the return; and (3) parents appreciated receiving cards and greatly valued staff members' efforts to telephone/visit and to attend the funeral. Months later, parents remembered positively which staff members engaged in which activities. Conversely, parents expressed disappointment when staff members did not engage in these activities and/or were absent from memorial/funeral services. CONCLUSIONS: Efforts to support families and to commemorate deceased children are appreciated by bereaved parents. Staff members' absences at commemorative events and a lack of supportive acts are noticed and regretted by families. Staff members and program administrators should attempt to arrange workloads to ensure meaningful contact between staff members and parents during the bereavement period.
2005
Identifier
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<a href="http://doi.org/10.1542/peds.2004-1980" target="_blank" rel="noreferrer">10.1542/peds.2004-1980</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
2005
Backlog
Bereavement
Carnevale FA
Child
Cohen SR
Death
Hospital
Hospitals
Humans
Intensive Care Units
Journal Article
Liben S
Macdonald ME
Meloche D
Non-U.S. Gov't
Parents/psychology
Pediatric
Pediatrics
Personnel
Professional-family Relations
Rennick J
Research Support
Social Support
Wolf SL
-
Dublin Core
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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.
Dublin Core
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Title
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Pediatric palliative care
Publisher
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Palliative Care: Core Skills And Clinical Competencies
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Creator
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Liben S
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Type
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Book/Book Section
2007
Book/Book Section
Liben S
Palliative Care: Core Skills And Clinical Competencies
-
Dublin Core
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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.
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
Publisher
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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.
Identifier
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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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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).
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
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
n/a
URL Address
<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403269/" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403269/</a>
Dublin Core
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Title
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Paediatric palliative care: There is always more we can do
Publisher
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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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Rapoport A; Liben S
Identifier
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<a href="https://doi.org/10.1093/pch/20.3.123" target="_blank" rel="noreferrer">10.1093/pch/20.3.123</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).
2015
Liben S
Paediatrics & Child Health
Rapoport A
-
Dublin Core
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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.
Citation List Month
n/a
Dublin Core
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Title
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Posttraumatic growth in parents caring for a child with a life-limiting illness: A structural equation model.
Publisher
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The American Journal Of Orthopsychiatry
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
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Human Development; Adult; Aged; Caregivers/psychology; Child; Disabled Children/psychology; Humans; Male; Middle Aged; Models Psychological; Palliative Care/psychology; Parents/psychology; Young Adult
Creator
An entity primarily responsible for making the resource
Cadell S; Hemsworth D; Smit QT; Steele R; Davies E; Liben S; Straatman L; Siden H
Description
An account of the resource
When parents first meet their child, they take on the entwined joys and burdens of caring for another person. Providing care for their child becomes the basic expectation, during health and illness, through the developmental milestones, into adulthood and beyond. For those parents who have a child who is born with or is later diagnosed with a life-limiting illness, parents also become caregivers in ways that parents of predominantly well children do not. While the circumstances are undisputedly stressful, for some parents benefits can co-occur along with the negative outcomes. This article tests two structural equation models of possible factors that allow these parent caregivers to experience growth in the circumstances. The diagnosis and illness of a child in the context of pediatric palliative care is a very complex experience for parents. The stresses are numerous and life-changing and yet the parents in this research demonstrated growth as measured by the Post Traumatic Growth Inventory. It appears that particular personal resources reflected in personal well-being are a precursor to the process of positive meaning making, which then, in turn, contributes to growth. The path to posttraumatic growth is not a simple one, but this research contributes to further elucidating it.
Identifier
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<a href="http://doi.org/10.1037/h0099384" target="_blank" rel="noreferrer">10.1037/h0099384</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).
2014
Adult
Aged
Cadell S
Caregivers/psychology
Child
Davies E
Disabled Children/psychology
Hemsworth D
Human Development
Humans
Liben S
Male
Middle Aged
Models Psychological
Palliative Care/psychology
Parents/psychology
Siden H
Smit QT
Steele R
Straatman L
The American Journal Of Orthopsychiatry
Young Adult
-
Dublin Core
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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
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Title
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Pediatric palliative care in Canada in 2012: a cross-sectional descriptive 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
2016
Creator
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Widger K; Davies D; Adam R; Vadeboncoeur C; Liben S; Amrita S; Stenekes S; Claude C; Daoust L; Gregoire Marie-Claude; Robertson M; Hodgson-Viden H; Laflamme J; Siden H
Description
An account of the resource
BACKGROUND: Pediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized pediatric palliative care in 2012 and the children who received it and to estimate the proportion of children who might benefit that received specialized care. METHODS: A cross-sectional descriptive design was used. Specialized pediatric palliative care programs were included in the study if they offered multidisciplinary consulting pediatric palliative care services to a wide range of children and served all populations of children with life-threatening illness regardless of diagnosis. Investigators in programs that had taken part in a prior study were invited to participate. New programs that met the inclusion criteria were identified through snowball sampling within pediatric palliative care networks. Program data were obtained via surveys with coinvestigators, and health record reviews were used to obtain information about the children who received care through the programs. RESULTS: All 13 programs identified, including 3 with a free-standing hospice, agreed to take part in the study. Of the 1401 children who received care, 508 (36.2%) were under 1 year of age, and 504 (36.0%) had a congenital illness or condition originating in the perinatal period. Of the 431 children who died in 2012, 105 (24.4%) died in a critical care setting. Programs with a hospice provided care to 517 children (36.9%). Children in this group tended to be older, more often had a neurologic illness and received care for a longer time than those who received care from programs without a hospice. Overall, 18.6% (95% confidence interval 17.1%-20.3%) of deceased children who might have benefitted from specialized pediatric palliative care based on diagnosis received such care, with 110 (25.2%) receiving care for less than 8 days. INTERPRETATION: Program growth and changes in patients' demographic and clinical characteristics indicate improved reach of programs. However, barriers remain that prevent most children with life-threatening conditions from receiving specialized pediatric palliative care services.
Identifier
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<a href="http://doi.org/10.9778/cmajo.20160054" target="_blank" rel="noreferrer">http://doi.org/10.9778/cmajo.20160054</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).
2016
Adam R
Amrita S
Claude C
Cmaj Open
Daoust L
Davies D
Gregoire Marie-Claude
Hodgson-Viden H
Laflamme J
Liben S
Robertson M
Siden H
Stenekes S
Vadeboncoeur C
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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PedPalASCNet Member Publications
Subject
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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
June 2017 List
URL Address
<a href="https://doi.org/10.1177/1049732315622189" target="_blank" rel="noreferrer">http://journals.sagepub.com/doi/abs/10.1177/1049732315622189?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3dpubmed</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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Understanding How Bereaved Parents Cope With Their Grief To Inform The Services Provided To Them
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
2017
Creator
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Stevenson M; Achille M; Liben S; Proulx MC; Humbert N; Petti A; Macdonald ME; Cohen SR
Description
An account of the resource
Our objective was to develop a rich description of how parents experience their grief in the first year after the death of their child, and how various bereavement follow-up and support services helped them during this time, with the aim of informing follow-up and support services offered to bereaved parents. Our findings situated parents’ individual experiences of coping within the social and institutional contexts in which they grieved. In the first year after the death of their child, parents regulated their intense feelings of grief through loss-oriented, restoration-oriented, and/or meaning reconstruction strategies. Often, parents’ relationships with others and many of the bereavement follow-up and support services helped them in this regard. This article also explores how the results may aid service providers in accompanying parents in a way that optimizes outcomes for these parents.
Identifier
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<a href="https://doi.org/10.1177/1049732315622189" target="_blank" rel="noreferrer">10.1177/1049732315622189</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).
Subject
The topic of the resource
America, North; adolescents/ youth; bereavement/grief; cancer, coping, psychology/psychosocial issues; children; end-of-life issues; families, caregiving; infants; interpretive description; interviews, semistructured; knowledge transfer; palliative care; program evaluation; psychosocial issues; relationships, parent–child; research, clinical; research, qualitative
2017
Achille M
Cohen SR
Humbert N
June 2017 List
Liben S
Macdonald ME
Petti A
Proulx MC
Qualitative Health Research
Stevenson M
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
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
November 2016 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
Protocol: Evaluating The Impact Of A Nation-wide Train-the-trainer Educational Initiative To Enhance The Quality Of Palliative Care For Children With Cancer
Publisher
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Bmc Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adolescent; Canada; Child; Child Preschool; Curriculum/standards; Health Personnel/education; Humans; Neoplasms/therapy; Palliative Care/methods; Palliative Care/standards; Pediatrics/methods; Program Evaluation; Quality Of Life/psychology; Teaching/standards
Pediatrics; Palliative Care; Cancer Quality Care; Education Knowledge Translation
Creator
An entity primarily responsible for making the resource
Widger K; Friedrichsdorf SJ; Wolfe J; Liben S; Pole JD; Bouffet E; Greenberg M; Husain A; Siden H; Whitlock JA; Rapoport A
Description
An account of the resource
Background
There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a ‘Train-the-Trainer’ model.
Methods/design
In this study we are using a pre- post-test design and an integrated knowledge translation approach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of health professionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care. The quality of palliative care will be assessed using data from three sources: a) parent and child surveys about symptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parent surveys about end-of-life and bereavement care. After being trained in EPEC®-Pediatrics, ‘Master Facilitators’ will train ‘Regional Teams’ affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three to five health professionals representing oncology, palliative care, and the community. Each team member will complete online modules and attend one of two face-to-face conferences, where they will receive training and materials to teach the EPEC®-Pediatrics curriculum to ‘End-Users’ in their region. Regional Teams will also choose a Tailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project in their region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars with other teams.
Discussion
Through this study we aim to raise the level of pediatric palliative care education amongst health care professionals in Canada. Our study will be a significant step forward in evaluation of the impact of EPEC®-Pediatrics both on dissemination outcomes and on care quality at a national level. Based on the anticipated success of our project we hope to expand the EPEC®-Pediatrics roll-out to health professionals who care for children with non-oncological life-threatening conditions.
Identifier
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DOI: 10.1186/s12904-016-0085-8
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
Adolescent
BMC Palliative Care
Bouffet E
Canada
Cancer Quality Care
Child
Child Preschool
Curriculum/standards
Education Knowledge Translation
Friedrichsdorf SJ
Greenberg M
Health Personnel/education
Humans
Husain A
Liben S
Neoplasms/therapy
November 2016 List
Palliative Care
Palliative Care/methods
Palliative Care/standards
Pediatrics
Pediatrics/methods
Pole JD
Program Evaluation
Quality Of Life/psychology
Rapoport A
Siden H
Teaching/standards
Whitlock JA
Widger K
Wolfe J
-
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
December 2016 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
Not There Yet: Pediatric Palliative Care In Canada 2002 – 2012
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
2016
Creator
An entity primarily responsible for making the resource
Widger K; Davies D; Dauost L; Liben S; Rapoport A; Gregoire MC; Vadeboncoeur C; Stenekes S; Cyr C; Sarpal A; Roy H; Hodgson-Viden H; Robertson M; Siden H
Description
An account of the resource
Objectives: As a follow-up to a study conducted in 2002,
our objective was to obtain an accurate description of
programs that provided specialized pediatric palliative
care (PPC) in 2012 and the children who received it;
explore changes in the programs and care provided
since 2002; and determine the current proportion of
children who receive care through the programs.
Methods: Collaborators from 13 PPC programs provided
information about program structure and staffing,
and the demographics, processes, and outcomes
of care for the children who received care during
2012. Data were compared with results of a similar
study from 2002.
Results: Between 2002 and 2012 the number of PPC
programs in Canada increased from 8 to 13 and the
number of children who received care through these
programs more than quadrupled from 317 to 1401.
However, the number of core staff across all programs
increased by only two and a half times from 13.6 Full
Time Equivalents in 2002 to 33.8 in 2012. Over the
10 year period, higher proportions of children who
received care in 2012 were less than 1 year of age,
(36.3% vs. 24.0%, p LT 0.01), had congenital conditions
or conditions originating in the perinatal period
(36.0% vs. 22.1%, p LT 0.01), and died in a neonatal
or pediatric intensive care setting (24.4% vs. 12.3%, p
LT 0.01). The proportion of children who might
benefit that actually received specialized PPC increased
from 5.0 percent in 2002 to 18.6 percent in 2012.
Conclusions: Program growth and changes in child
demographics indicate improved reach of the programs
over time. However, remaining barriers prevent
the majority of children from receiving specialized
PPC services in a timely manner. Exploration of
changes over time provides information to clinicians,
and policy and decision makers to guide further program
development in Canada and internationally.
Identifier
An unambiguous reference to the resource within a given context
DOI: http://dx.doi.org/10.1016/j.jpainsymman.2016.10.057
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
Claude Cyr
Davies D
December 2016 List
Gregoire Marie-Claude
Heather Hodgson-Viden
Helene Roy
Journal of Pain and Symptom Management
Liben S
Lysanne Dauost
Rapoport A
Robertson M
Sarpal A
Siden H
Simone Stenekes
Vadeboncoeur C
Widger K