1
40
13
-
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
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<a href="http://doi.org/10.1093/jpepsy/jsw053" target="_blank" rel="noreferrer">http://doi.org/10.1093/jpepsy/jsw053</a>
<a href="http://www.ncbi.nlm.nih.gov/pubmed/27342306" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/pubmed/27342306</a>
Dublin Core
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Title
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Siblings of Children With a Complex Chronic Health Condition: Maternal Posttraumatic Growth as a Predictor of Changes in Child Behavior Problems
Publisher
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Journal of Pediatric Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
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Stephenson E; DeLongis A; Steele R; Cadell S; Andrews GS; Siden H
Description
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OBJECTIVE: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. METHODS: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports. At each visit, mothers also completed self-reports of posttraumatic growth. RESULTS: Time-lagged multilevel regression analyses revealed that higher levels of maternal posttraumatic growth predicted subsequent declines in parent-reported internalizing, externalizing, and total behavior problems among healthy siblings. These findings were partially replicated using youth self-reports of their own behavior problems. CONCLUSION: The findings suggest that the benefits of posttraumatic growth may extend beyond the self to other family members, particularly to children in the family.
2016-06
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/jpepsy/jsw053" target="_blank" rel="noreferrer">10.1093/jpepsy/jsw053</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
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Journal Article
2016
Andrews GS
Backlog
Cadell S
DeLongis A
Journal Article
Journal of Pediatric Psychology
Siden H
Steele R
Stephenson E
-
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
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2016.10.298" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2016.10.298</a>
<a href="http://www.sciencedirect.com/science/article/pii/S0885392416306704" target="_blank" rel="noreferrer noopener">http://www.sciencedirect.com/science/article/pii/S0885392416306704</a>
Dublin Core
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Title
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P259 A Scoping Review to Examine Symptoms in Children with Rare, Progressive, Life-Threatening Disorders
Publisher
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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
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Siden H; Widger K; Gregoire MC; Dewan T; Harvey B; Hermansen AM; Pawliuk C; Brown H; Beck C; Steele R
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<a href="http://doi.org/10.1016/j.jpainsymman.2016.10.298" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2016.10.298</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
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Journal Article
Description
An account of the resource
2016-12
2016
Backlog
Beck C
Brown H
Dewan T
Grégoire MC
Harvey B
Hermansen AM
Journal Article
Journal of Pain and Symptom Management
Pawliuk C
Q3 Scoping Review
Siden H
Steele R
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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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://ubcmj.com/physician-stress-in-the-context-of-medical-aid-in-dying/" target="_blank" rel="noreferrer">https://ubcmj.com/physician-stress-in-the-context-of-medical-aid-in-dying/</a>
Dublin Core
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Title
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Physician stress in the context of medical aid in dying
Publisher
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University of British Columbia Medical Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
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Siden H
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
Description
An account of the resource
2016-09
2016
Backlog
Journal Article
Siden H
University of British Columbia Medical Journal
-
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
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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Crocker, et al.: Reducing barriers to parent participation in pediatric palliative care research.
Publisher
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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
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Siden H; Steele R; Cadell S
Identifier
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<a href="http://doi.org/10.1177/0269216315620945" target="_blank" rel="noreferrer">10.1177/0269216315620945</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
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
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
An unambiguous reference to the resource within a given context
<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
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
February 2017 List
Dublin Core
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Title
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Identifying Indicators Of Quality Pediatric Palliative Care: A Systematic Review
Publisher
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Journal Of Pain And Symptom Management
Date
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2016
Creator
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Duc J; Widger K; Johnston K; Rapoport A; Siden H; Feudtner C; Wolfe J
Description
An account of the resource
Pediatric palliative care (PPC) is a relatively new but rapidly expanding specialty area with a variety of models of care provision. Identification and validation of quality indicators specific to PPC is essential to accurately monitor and assess the quality of care provided to children with life-threatening conditions and their families. Objectives: We conducted a systematic review to identify structure, process and outcome indicators of quality palliative care for children with life-threatening conditions and their families, and evaluate how these indicators are measured. Methods: We conducted our search using three electronic databases (CINAHL, MEDLINE, Embase) and a combination of the following key word terms: palliative care, healthcare quality, and quality assessment / improvement / measurement / metrics or preferred practices. Results were limited to studies in children, aged 0-18 years. Book chapters, theses and conference abstracts were excluded. Titles and abstracts were reviewed for relevance, followed by full article review for all retained articles. Two reviewers were involved at each level of review. Results: After removal of duplicates, 5909 titles and abstracts were screened for relevance, 1322 full articles were reviewed, and 121 articles were included in the final review. Key indicators included: availability of specialised PPC services (including bereavement care); proportion of children suffering from a variety of symptoms; proportion of families with documented discussions of goals of care; proportion of children dying in their preferred location; and proportion of parents satisfied with PPC service provision. Conclusions: There are a number of indicators and associated measures for assessing the quality of pediatric palliative care, however further work is required to validate these indicators and identify additional outcome indicators. Identification of key quality indicators provides a foundation for critical validation work and assessment of the impact of interventions designed to improve the quality of pediatric palliative care.
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Identifier
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DOI: http://dx.doi.org/10.1016/j.jpainsymman.2016.10.294
2016
Duc J
February 2017 List
Feudtner C
Johnston K
Journal of Pain and Symptom Management
Rapoport A
Siden H
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
November 2016 List
Dublin Core
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Title
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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
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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
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
May 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
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Investing In Uncertainty: Young Adults With Life-limiting Conditions Achieving Their Developmental Goals.
Publisher
An entity responsible for making the resource available
Journal Of 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
Disabilities; Transition; Adolescent; Policy; Perspectives; Health-care; Palliative Care; Health Care Sciences & Services; Youth
Creator
An entity primarily responsible for making the resource
Cook KA; Jack SM; Siden H; Thabane L; Browne G
Description
An account of the resource
BACKGROUND:
With improvements in pediatric care and technology, more young adults (YAs) with life-limiting conditions (LLCs) are surviving into adulthood. However, they have limited expectations to live beyond the first decade of adulthood. This study describes the monumental efforts required for YAs with LLCs to achieve their goals in an abbreviated life.
OBJECTIVES:
The experiences and aspirations of YAs with LLCs to achieve their goals are relatively unknown. This report focuses on their experiences of living with uncertainty and its impact on achieving developmental goals.
DESIGN:
This study is one component of a larger descriptive study using an innovative bulletin board focus group to examine life experiences of YAs with LLCs.
RESULTS:
YAs with LLCs share the aspirations and goals of all YAs. Some participants demonstrated a striking capacity to navigate system barriers and achieve their goals, whereas others "got stuck" resulting in lost opportunities. Successful personal life investments were possible if resources were made available, coordinated, navigable, and responsive to new and special requests. Transformative changes to health, social care, and community services are necessary to support their YA ambitions.
CONCLUSIONS:
This study gave voice to those who were previously unheard and demonstrates the monumental hurdles YAs with LLCs face to achieve their goals. A palliative approach to care can mitigate unnecessary hardships and support their goals.
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Adolescent
Browne G
Cook KA
Disabilities
Health Care Sciences & Services
Health-care
Jack SM
Journal of Palliative Medicine
May 2016 List
Palliative Care
Perspectives
Policy
Siden H
Thabane L
Transition
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
June 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
Siblings Of Children With A Complex Chronic Health Condition: Maternal Posttraumatic Growth As A Predictor Of Changes In Child Behavior Problems.
Publisher
An entity responsible for making the resource available
Journal Of Pediatric Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Child Behavior Problems; Complex Chronic Conditions; Families; Pediatric Palliative Care; Posttraumatic Growth; Siblings.
Creator
An entity primarily responsible for making the resource
Stephenson E; DeLongis A; Steele R; Cadell S; Andrews GS; Siden H
Description
An account of the resource
OBJECTIVE:
The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. METHODS: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports. At each visit, mothers also completed self-reports of posttraumatic growth. RESULTS: Time-lagged multilevel regression analyses revealed that higher levels of maternal posttraumatic growth predicted subsequent declines in parent-reported internalizing, externalizing, and total behavior problems among healthy siblings. These findings were partially replicated using youth self-reports of their own behavior problems. CONCLUSION: The findings suggest that the benefits of posttraumatic growth may extend beyond the self to other family members, particularly to children in the family.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1093/jpepsy/jsw053
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
Andrews GS
Cadell S
Charting the territory
Child Behavior Problems
Complex Chronic Conditions
DeLongis A
Families
Journal of Pediatric Psychology
June 2016 List
Pediatric Palliative Care
Posttraumatic Growth
Siblings.
Siden H
Steele R
Stephenson E
-
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
June 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
No Child Is An Island: Ethical Considerations In End-of-life Care For Children And Their Families
Publisher
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Current Opinion In Supportive And Palliative Care
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
Rapoport A; Morrison W
Description
An account of the resource
PURPOSE OF REVIEW:
Ethical challenges are commonly encountered when caring for children with life-threatening conditions.
RECENT FINDINGS:
Controversial end-of-life issues, such as physician-assisted death and medical futility, may also arise in children. The approach to these issues in children may be guided by the 'adult' medical literature; the age of the patient should not be a relevant factor in determining the morality of these acts. As such, the focus of this review is on ethical issues unique to children and adolescents by nature of their dependence on their parents. Appreciation that child well-being is best promoted when care aligns with parental beliefs, values and culture has given rise to the practice of family-centred care, which we prefer to call 'family-partnered' care. Occasionally, a family-partnered approach may challenge fundamental paediatric ethical principles, including best interests, developing autonomy, and the importance of honesty and truth-telling.
SUMMARY:
This article explores the challenges that may arise when there is disagreement between the child, the parents, and the healthcare providers about care at the end-of-life and provides suggestions to clinicians about how to help resolve these conflicts.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1097/SPC.0000000000000226
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Current Opinion in Supportive and Palliative Care
June 2016 List
Morrison W
Rapoport 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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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
July 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
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Shifting Focus In Pediatric Advance Care Planning: From Advance Directives To Family Engagement
Publisher
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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
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Siden H; Chavoshi N
Description
An account of the resource
The foundational principle of palliative care is to provide comfort, ameliorate symptoms, and offer emotional support when death is inevitable. Advance care planning (ACP) elicits patients' goals for the future. One important result of an ACP discussion may be an advance directive (AD), a written order delineating explicit wishes regarding medical interventions.
Pediatric palliative care (PPC) is a young field and developed many of its approaches as reflections from adult palliative care. ACP has not been well evaluated in children.1 Often ADs are thought to be synonymous with a “do not attempt resuscitation” (DNAR) order, which in turn has been treated as an indicator for a nonintervention-oriented stance and as a proxy for ACP discussions between families and clinicians.2 Another barrier identified in the literature is physician reluctance to undertake ACP discussions. Clinicians report feeling ill prepared and inadequately trained to carry out such conversations.3
Studies involving parents of children with life-threatening conditions showed that parents are interested in ACP, provided there is emotional support available.3 and 4 The literature indicates that ACP discussions likely need to occur more than once over time.
Identifier
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http://dx.doi.org/10.1016/j.jpainsymman.2016.05.010
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
Chavoshi N
Journal of Pain and Symptom Management
July 2016 List
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
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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
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
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Not There Yet: Pediatric Palliative Care In Canada 2002 – 2012
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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
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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.
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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
-
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
August 2016 List
URL Address
<a href="http://journals.sagepub.com/doi/10.1177/1049732316664712" target="_blank" rel="noreferrer noopener">http://journals.sagepub.com/doi/10.1177/1049732316664712</a>
Notes
Hard-copy issue published: February 1, 2017; Article first published online: August 23, 2016
Cite as:
Davies, B., Steele, R., Krueger, G., Albersheim, S., Baird, J., Bifirie, M., Cadell, S., Doane, S., Garga, D., Siden, H., Strahlendorf, C., & Zhou, Y. (February, 2017). Best practices in provider/parent interaction. Qualitative Health Research, 27(3), 406-420. doi:10.1177/1049732316664712
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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Best Practice In Provider/Parent Interaction
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
2016
Subject
The topic of the resource
Pediatrics; Quality; Parents Experiences; Communication; Hospital Staff; Pediatric Palliative Care; Grounded Theory; Social Sciences; Biomedical; Family Perspectives; Qualitative Analysis; Empathy; Medicine; Practice Guidelines; Childs Death; Canada; Social Sciences; Interdisciplinary; Patient-provider; Reflection; Information Science & Library Science; Palliative Care; Relationships; Best Practice
Creator
An entity primarily responsible for making the resource
Davies B; Steele R; Krueger G; Albersheim S; Baird J; Bifirie M; Cadell S; Doane G; Garga D; Siden H; Strahlendorf C; Zhao Y
Description
An account of the resource
In this 3-year prospective grounded theory study in three pediatric settings, we aimed to develop a conceptualization of best practice health care providers (BPHCPs) in interaction with parents of children with complex, chronic, life-threatening conditions. Analysis of semistructured interviews with 34 parents and 80 health care professionals (HCPs) and 88 observation periods of HCP/parent interactions indicated that BPHCPs shared a broad worldview; values of equity, family-centered care, and integrity; and a commitment to authentic engagement. BPHCPs engaged in direct care activities, in connecting behaviors, and in exquisitely attuning to particularities of the situation in the moment, resulting in positive outcomes for parents and HCPs. By focusing on what HCPs do well, findings showed that not only is it possible for HCPs to practice in this way, but those who do so are also recognized as being the best at what they do. We provide recommendations for practice and initial and ongoing professional education.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1177/1049732316664712" target="_blank" rel="noreferrer noopener">10.1177/1049732316664712</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
Albersheim S
August 2016 List
Baird J
Best Practice
Best Practices in Provider/Parent Interactions in Pediatrics
Bifirie M
Biomedical
Cadell S
Canada
Childs Death
Communication
Davies B
Doane G
Empathy
Family Perspectives
Garga D
Grounded Theory
Hospital Staff
Information Science & Library Science
Interdisciplinary
Krueger G
Medicine
Palliative Care
Parents Experiences
Patient-provider
Pediatric Palliative Care
Pediatrics
Practice Guidelines
Qualitative Analysis
Qualitative Health Research
Quality
Reflection
Relationships
Siden H
Social Sciences
Steele R
Strahlendorf C
Zhao Y