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40
241
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PedPalASCNet Member Publications
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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
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Title
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Best Practice In Provider/Parent Interaction
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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
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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
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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
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<a href="https://doi.org/10.1177/1049732316664712" target="_blank" rel="noreferrer noopener">10.1177/1049732316664712</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
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
-
Dublin Core
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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
December 2016 List
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Title
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Not There Yet: Pediatric Palliative Care In Canada 2002 – 2012
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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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
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DOI: http://dx.doi.org/10.1016/j.jpainsymman.2016.10.057
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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
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
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PedPalASCNet Member Publications
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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
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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
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2016
Chavoshi N
Journal of Pain and Symptom Management
July 2016 List
Siden H
-
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Title
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PedPalASCNet Member Publications
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Citation List Month
June 2016 List
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Title
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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
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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
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DOI: 10.1097/SPC.0000000000000226
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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
-
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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
June 2016 List
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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
Subject
The topic of the resource
Child Behavior Problems; Complex Chronic Conditions; Families; Pediatric Palliative Care; Posttraumatic Growth; Siblings.
Creator
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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
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DOI: 10.1093/jpepsy/jsw053
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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
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
-
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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
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Citation List Month
May 2016 List
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Title
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Investing In Uncertainty: Young Adults With Life-limiting Conditions Achieving Their Developmental Goals.
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
2016
Subject
The topic of the resource
Disabilities; Transition; Adolescent; Policy; Perspectives; Health-care; Palliative Care; Health Care Sciences & Services; Youth
Creator
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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.
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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
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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
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
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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
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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
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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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
-
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PedPalASCNet Member Publications
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Citation List Month
October 2017 List
Notes
<p>Friedrichsdorf, Stefan J<br />Postier, Andrea C<br />Andrews, Gail S<br />Hamre, Karen Es<br />Steele, Rose<br />Siden, Harold<br />Journal Article<br />New Zealand<br />J Pain Res. 2017 Jul 31;10:1841-1852. doi: 10.2147/JPR.S138153. eCollection 2017.</p>
URL Address
<a href="https://doi.org/10.2147/JPR.S138153" target="_blank" rel="noreferrer">https://doi.org/10.2147/JPR.S138153</a>
Dublin Core
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Title
A name given to the resource
Pain Reporting And Analgesia Management In 270 Children With A Progressive Neurologic, Metabolic Or Chromosomally Based Condition With Impairment Of The Central Nervous System: Cross-sectional, Baseline Results From An Observational, Longitudinal Study
Publisher
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Journal Of Pain Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Hospice; Life-limiting; Neuropathic Pain; Palliative; Pediatric Palliative Care
Creator
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Friedrichsdorf SJ; Postier A; Andrews GS; Hamre K E; Steele R; Siden H
Description
An account of the resource
Little is known about the prevalence, characterization and treatment of pain in children with progressive neurologic, metabolic or chromosomal conditions with impairment of the central nervous system. The primary aims of this study were to explore the differences between parental and clinical pain reporting in children with life-limiting conditions at the time of enrollment into an observational, longitudinal study and to determine if differences in pain experiences were associated with patient- or treatment-related factors. Pain was common, under-recognized and undertreated among the 270 children who enrolled into the "Charting the Territory" study. Children identified by their parents as experiencing pain (n=149, 55%) were older, had more comorbidities such as dyspnea/feeding difficulties, were less mobile with lower functional skills and used analgesic medications more often, compared to pain-free children. Forty-one percent of children with parent-reported pain (21.8% of all patients) experienced pain most of the time. The majority of clinicians (60%) did not document pain assessment or analgesic treatment in the medical records of patients who were experiencing pain. Documentation of pain in the medical record was positively correlated with children receiving palliative care services and being prescribed analgesics, such as acetaminophen, nonsteroidal anti-inflammatory drugs and opioids, as well as the adjuvant analgesics gabapentin and amitriptyline.
Identifier
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<a href="https://doi.org/10.2147/JPR.S138153" target="_blank" rel="noreferrer">10.2147/jpr.s138153</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).
2017
Andrews GS
Charting the territory
Friedrichsdorf SJ
Hamre K E
Hospice
Journal Of Pain Research
Life-limiting
Neuropathic Pain
October 2017 List
Pain and Irritability Project
Palliative
Pediatric Palliative Care
Postier A
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
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
An entity responsible for making the resource available
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
An entity primarily responsible for making the resource
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
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1542/peds.2016-2956" target="_blank" rel="noreferrer">10.1542/peds.2016-2956</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).
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
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 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
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Title
A name given to the resource
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
An entity primarily responsible for making the resource
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
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1177/1049732315622189" target="_blank" rel="noreferrer">10.1177/1049732315622189</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).
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
May 2017 List
URL Address
<a href="http://doi.org/10.1016/j.hcmf.2010.04.009" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.hcmf.2010.04.009</a>
Dublin Core
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Title
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A Comparative Cost-minimization Analysis Of Providing Paediatric Palliative Respite Care Before And After The Opening Of Services At A Paediatric Hospice
Publisher
An entity responsible for making the resource available
Healthcare Management Forum
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Costs And Cost Analysis; Hospices/ec [economics]; Palliative Care/ec [economics]; Pediatrics/ec [economics]; Respite Care/ec [economics]; Child; Female; Health Care Costs; Hospices; Humans; Male; Palliative Care; Retrospective Studies; Statistics Nonparametric
Creator
An entity primarily responsible for making the resource
Pascuet E; Cowin L; Vaillancourt R; Splinter W; Vadeboncoeur C; Dumond LG; Ni A; Rattray M
Description
An account of the resource
A palliative care service provider may add or decrease overall operational costs to the healthcare system. This study assessed the costs of managing respite care for children with life-limiting illness at the Children's Hospital of Eastern Ontario for the 12-month period both before and after services at Roger's House (RH, a paediatric hospice) was made available. The opening and operation of RH for providing respite care resulted in a minimization of operational costs (n = 66 patients, mean decrease of $4,251.95 per month per patient).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.hcmf.2010.04.009" target="_blank" rel="noreferrer noopener">10.1016/j.hcmf.2010.04.009</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).
2010
Child
Costs And Cost Analysis
Cowin L
Dumond LG
Female
Health Care Costs
Healthcare Management Forum
Hospices
Hospices/ec [economics]
Humans
Male
May 2017 List
Ni A
Palliative Care
Palliative Care/ec [economics]
Pascuet E
Pediatrics/ec [economics]
Rattray M
Respite Care/ec [economics]
Retrospective Studies
Splinter W
Statistics Nonparametric
Vadeboncoeur C
Vaillancourt 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
July 2017 List
Notes
<p>Rahimzadeh, Vasiliki<br/>Bartlett, Gillian<br/>Longo, Cristina<br/>Crimi, Laura<br/>Macdonald, Mary Ellen<br/>Jabado, Nada<br/>Ells, Carolyn<br/>Canadian Institutes of Health Research/Canada<br/>Journal Article<br/>Research Support, Non-U.S. Gov't<br/>England<br/>BMC Palliat Care. 2015 Oct 16;14:50. doi: 10.1186/s12904-015-0048-5.</p>
Dublin Core
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Title
A name given to the resource
Promoting An Ethic Of Engagement In Pediatric Palliative Care Research
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
2015
Subject
The topic of the resource
Research; Humans; Palliative Care/methods; Patient Participation/methods; Pediatric Nursing/methods; Quality Of Life
Creator
An entity primarily responsible for making the resource
Rahimzadeh V; Bartlett G; Longo C; Crimi L; Macdonald ME; Jabado N; Ells C
Description
An account of the resource
BACKGROUND: This paper defends the ethical and empirical significance of direct engagement with terminally ill children and adolescents in PPC research on health-related quality of life. Clinical trials and other forms of health research have resulted in tremendous progress for improving clinical outcomes among children and adolescents diagnosed with a life-threatening illness. Less attention has been paid, however, to engaging this patient population directly in studies aimed at optimizing health-related quality of life in PPC. Though not restricted to care at the end of life, PPC--and by extension PPC research--is in part dependent on recognizing the social complexities of death and dying and where health-related quality of life is a fundamental element. To explore these complexities in depth requires partnership with terminally ill children and adolescents, and acknowledgement of their active social and moral agency in research. DISCUSSION: Principles of pediatric research ethics, theoretical tenets of the "new sociology of the child(hood)," and human rights codified in the United Nations Convention on the Rights of the Child (UNCRC) underpin the position that a more engagement-centered approach is needed in PPC research. The ethics, sociologies and human rights of engagement will each be discussed as they relate to research with terminally ill children and adolescents in PPC. Qualitative method(ologies) presented in this paper, such as deliberative stakeholder consultations and phenomenology of practice can serve as meaningful vehicles for achieving i) participation among terminally ill children and adolescents; ii) evidence-bases for PPC best practices; and iii) fulfillment of research ethics principles. CONCLUSION: PPC research based on direct engagement with PPC patients better reflects their unique expertise and social epistemologies of terminal illness. Such an approach to research would strengthen both the ethical and methodological soundness of HRQoL inquiry in PPC.
Identifier
An unambiguous reference to the resource within a given context
10.1186/s12904-015-0048-5
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).
2015
Bartlett G
BMC Palliative Care
Crimi L
Ells C
Humans
Jabado N
July 2017 List
Longo C
Macdonald ME
Palliative Care/methods
Patient Participation/methods
Pediatric Nursing/methods
Quality Of Life
Rahimzadeh V
Research
-
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
July 2017 List
Notes
<p>1091-7683<br />Russell, Ceilidh Eaton<br />Widger, Kimberley<br />Beaune, Laura<br />Neville, Alexandra<br />Cadell, Susan<br />Steele, Rose<br />Rapoport, Adam<br />Rugg, Maria<br />Barrera, Maru<br />Journal Article<br />United States<br />Death Stud. 2017 May 25. doi: 10.1080/07481187.2017.1334009.</p>
URL Address
<a href="http://dx.doi.org/10.1080/07481187.2017.1334009" target="_blank" rel="noreferrer">http://dx.doi.org/10.1080/07481187.2017.1334009</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
Siblings' Voices: A Prospective Investigation Of Experiences With A Dying Child
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
2017
Subject
The topic of the resource
Children; End-of-life; Palliative Care; Pediatrics; Sibling
Creator
An entity primarily responsible for making the resource
Russell CE; Widger K; Beaune L; Neville A; Cadell S; Steele R; Rapoport A; Rugg M; Barrera M
Description
An account of the resource
Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal qualitative study over two years using interpretive descriptive methodology to understand siblings' perspectives when a brother or sister was dying at home or in hospital. The insights from the 10 siblings revealed complex experiences, both personal and with the ill child, their families, and peers. These experiences were paradoxically sources of strain and of support, revealing the importance of validation and normalization in assisting siblings to successfully navigate the experience.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1080/07481187.2017.1334009" target="_blank" rel="noreferrer">10.1080/07481187.2017.1334009</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).
2017
Barrera M
Beaune L
Cadell S
Children
Death studies
end-of-life
July 2017 List
Neville A
Palliative Care
Pediatrics
Rapoport A
Rugg M
Russell CE
Sibling
Steele R
Widger K
-
https://d1y502jg6fpugt.cloudfront.net/32554/archive/files/ecbfbffdb103ee96ffc60962c831d8b6.pdf?Expires=1712793600&Signature=IiSrTZ2pGlzAEyCV2WST0nb9axs3OYQY41ZVFBUyJVQLnypQf4Xr0i0P%7EQUJ5wkmkshUJamWVCi33gGlqG22D10cs3BtaDON9I6yYre2Txmil%7EeSeZd6-XCuGg7n0474uk4W7dGOYLcQSzbrz36sY5-QlIBufLG22sI5JrLRiWbyauRUDK%7EnAZWF0TJt%7Ep06I9AN0eS1jFdg91SauOC-UaZq%7E7V7FFhS5Lbc6xQviJL69HTGjQqnv8zGi6XzwcH9wk8j3PbE0UBC1kT-hUoJy45s0jOfx1EymgE6FDKGEoDU%7EriuHQYvYLnA6MpfYfCe2hcBqaIdFYH%7EYv4odXP7xg__&Key-Pair-Id=K6UGZS9ZTDSZM
d9be4c6fa9c3a39d7d813f472dddb016
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
Still Image
A static visual representation. Examples include paintings, drawings, graphic designs, plans and maps. Recommended best practice is to assign the type Text to images of textual materials.
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
Using Web Analytics and Social Media to Improve Knowledge Translation and Increase Patient Engagement
Creator
An entity primarily responsible for making the resource
Robins S; Siden H; Pawliuk C; Hermansen AM
Publisher
An entity responsible for making the resource available
PedPalASCNet
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Rights
Information about rights held in and over the resource
Article information provided for research and reference use. It is licensed under the Creative Commons License: <a href="https://creativecommons.org/licenses/by-nc-nd/4.0/" target="_blank" rel="noreferrer">Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)</a>
Description
An account of the resource
For the last several months our team of clinicians and health librarians have been collecting analytics data via Google Analytics, Twitter analytics, and MailChimp analytics to inform the following projects as part of an outreach strategy: <br /><ul><li>The re-design and revision of an existing website showcasing a pan-Canadian collaboration (PedPalASCNET) between experts in pediatric palliative care. We have also begun drafting and designing a second website centered around a study titled “Optimizing the Management of Pain and Irritability in Children with Severe Neurological Impairments.”</li>
<li>The re-evaluation of our social media presence, based on user engagement with our monthly citation list email campaigns, titled “Trends in Pediatric Palliative Care Research”</li>
<li>A digital library to showcase and make available the latest research in the area of pediatric palliative care, containing the metadata to over 500 carefully selected publications</li>
</ul>
Our primary goal has been to communicate and translate the knowledge from our projects in a way which caregivers, clinicians, and researchers can readily understand. A second goal has been to promote and disseminate the knowledge from other researchers’ projects. These goals have been enhanced by our ability to promote research via our social media presence and monthly mailing list, and by having a digital library to make pediatric palliative research more accessible and discoverable.<br />(presented November 2017)
Health librarian
Hermansen AM
knowledge translation
Pawliuk C
poster
Research Methods
Robins S
Siden H
social media
web analytics
-
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
Charting the territory: Describing the functional abilities of children with progressive neurological conditions.
Publisher
An entity responsible for making the resource available
Research In Developmental Disabilities
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Functional Abilities; Pediatric Evaluation Of Disability Inventory; Progressive Genetic Metabolic Or Neurological Conditions (pncs)
Creator
An entity primarily responsible for making the resource
Tatla Sandy K; Holsti L; Andrews GS; Feichtinger L; Steele R; Siden H
Description
An account of the resource
AIMS: Little is known about the functional abilities of children with progressive genetic, metabolic, or neurological conditions (PNCs). In this study, children with PNCs were followed over a 2-year period to assess their functional abilities over time. Specific aims were to: 1) describe the changes in functional skills and the effects of age for children with PNCs, 2) assess changes in these children's need for caregiver assistance over time, and 3) examine relationships between these children's functional skills and need for caregiver assistance. METHODS: This study involved a longitudinal, descriptive design with three assessments occurring at Baseline, Year 1, Year 2. Functional skills and caregiver assistance were assessed by the Pediatric Evaluation of Disability Inventory (PEDI). The PEDI questionnaire was completed at baseline and then yearly by parents, along with the assistance of a trained research assistant (RA). RESULTS: The study was completed with 83 children (mean age at Baseline=7.1yrs, SD=4.6). Mean Functional skills scores were in the low ranges at Baseline and did not change significantly across time points (F(2, 71)=0.437, p=0.58). Time point had no effect on caregiver assistance ratings (p<0.2); however, children required greater amounts of help with self-care at later time points than for other functional domains. Statistically significant correlations were found between PEDI-Functional skills and caregiver assistance ratings (r=0.80-0.90, p<0.01). CONCLUSIONS: Functional skills were low for these children overall, irrespective of age. In children with PNCs: 1) mean functional skills did not change significantly over time; 2) caregiver assistance scores remained stable and 3) functional skills and levels of caregiver assistance were strongly positively correlated. Further research to explore the long-term functional trajectory in children with a PNC is recommended.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ridd.2017.10.001" target="_blank" rel="noreferrer">10.1016/j.ridd.2017.10.001</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).
2017
Andrews GS
Charting the territory
Feichtinger L
Functional Abilities
Holsti L
Pediatric Evaluation Of Disability Inventory
Progressive Genetic Metabolic Or Neurological Conditions (pncs)
Research in Developmental Disabilities
Siden H
Steele R
Tatla Sandy 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
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
Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study.
Publisher
An entity responsible for making the resource available
Cmaj Open
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; 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>
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
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
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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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
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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
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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Introducing a lexicon of terms for paediatric palliative care.
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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Spicer S; Macdonald ME; Davies D; Vadeboncoeur C; Siden H
Identifier
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<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403281/" target="_blank" rel="noreferrer">PMC4403281</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).
2015
Davies D
Macdonald ME
Paediatrics & Child Health
Siden H
Spicer S
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
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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Case 2: A 10-year-old boy with leg pain and swelling.
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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Doherty M; Wheaton L; Vadeboncoeur C
Identifier
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<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403279/" target="_blank" rel="noreferrer">PMC4403279</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).
2015
Doherty M
Paediatrics & Child Health
Vadeboncoeur C
Wheaton 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
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
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.
Publisher
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Cmaj Open
Date
A point or period of time associated with an event in the lifecycle of the resource
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.
Identifier
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<a href="http://doi.org/10.9778/cmajo.20140044" target="_blank" rel="noreferrer">10.9778/cmajo.20140044</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
Chavoshi N
Cmaj Open
Conte T
Mitton C
Siden H
Trenaman LM
-
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
Using colors to assess pain in toddlers: validation of "the rainbow pain scale"-a proof-of-principle study.
Publisher
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Journal Of Pediatric Oncology Nursing : Official Journal Of The Association Of Pediatric Oncology Nurses
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Color; Age Factors; Child; Child Preschool; Female; Humans; Infant; Inpatients/psychology; Male; Neoplasms/psychology; Oncology; Oncology Nursing/methods; Outpatients/psychology; Pain; Pain/diagnosis/psychology; Pain Measurement/methods; Pain Scale; Pediatric Nursing/methods; Preschool Children; Psychometrics/instrumentation; Self Report
Creator
An entity primarily responsible for making the resource
Mahon P; Holsti L; Siden H; Strahlendorf C; Turnham L; Giaschi D
Description
An account of the resource
Self-report, when available, is considered the ideal way to assess the intensity and other aspects of pain in children. However, self-report scales are often too complex cognitively for preschool-aged children (2-4 years). The Rainbow Pain Scale (RPS) was developed to provide individualized self-reported pain ratings for preschool-aged children. The psychometric properties of this scale have yet to be evaluated. To ensure validity, our first step was to compare RPS scores to a well-validated scale in older children who were able to self-report their pain. The purpose of this study was to assess the concurrent validity of the RPS in children aged 5 to 10 years as proof of principle. We compared ratings of 49 children's pain using the RPS with those on the Faces Pain Scale-Revised (FPS-R). Participants suffering from pain related to cancer and cancer treatment were recruited to complete both scales at 3 time points, during both inpatient and outpatient clinic visits. Pearson's r and Cohen's kappa were used to evaluate the level of association between the scales. The association between RPS and the
Identifier
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<a href="http://doi.org/10.1177/1043454214555197" target="_blank" rel="noreferrer">10.1177/1043454214555197</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).
2014
Age Factors
Child
Child Preschool
Color
Female
Giaschi D
Holsti L
Humans
Infant
Inpatients/psychology
Journal Of Pediatric Oncology Nursing : Official Journal Of The Association Of Pediatric Oncology Nurses
Mahon P
Male
Neoplasms/psychology
Oncology
Oncology Nursing/methods
Outpatients/psychology
Pain
Pain Measurement/methods
Pain Scale
Pain/diagnosis/psychology
Pediatric Nursing/methods
Preschool Children
Psychometrics/instrumentation
Self Report
Siden H
Strahlendorf C
Turnham 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
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
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An integrative approach to music therapy in pediatric palliative care.
Publisher
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Journal Of Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
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Hospices; Music Therapy; Palliative Care; Adolescent; British Columbia; Child; Child Preschool; Female; Humans; Infant; Male; Program Development; Program Evaluation; Young Adult
Creator
An entity primarily responsible for making the resource
Clark BA; Siden H; Straatman L
Identifier
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<a href="https://www.ncbi.nlm.nih.gov/pubmed/25265742" target="_blank" rel="noreferrer">25265742</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).
2014
Adolescent
British Columbia
Child
Child Preschool
Clark BA
Female
Hospices
Humans
Infant
Journal Of Palliative Care
Male
Music Therapy
Palliative Care
Program Development
Program Evaluation
Siden H
Straatman L
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.
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
Characteristics of a pediatric hospice palliative care program over 15 years.
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
British Columbia/epidemiology; Child; Child Preschool; Cohort Studies; Demographics; Female; Hospice Care; Hospices/methods/trends; Humans; Life Threatening; Male; Palliative Care; Palliative Care/methods/trends; Patient Care Team/trends; Pediatrics/methods/trends; Retrospective Studies; Survival Rate/trends; Time Factors
Creator
An entity primarily responsible for making the resource
Siden H; Chavoshi N; Harvey B; Parker A; Miller T
Description
An account of the resource
OBJECTIVES: Pediatric palliative care has seen the adoption of several service provision models, yet there is minimal literature describing them. Canuck Place Children's Hospice (CPCH) is North America's first freestanding pediatric hospice. This study describes the characteristics of and services delivered to all children on the CPCH program from 1996 to 2010. METHODS: A retrospective review of all patient medical records CPCH was conducted. Analyses examined trends and correlations between 40 selected data points: linear regression modeling was used to assess trends over time; t tests were used to examine significant associations between independent means; and the Kaplan-Meier method was used to measure survival probabilities. RESULTS: The study cohort included 649 children. The majority of diagnoses belonged to cancers (30%), and diseases of the neuromuscular (20%), and central nervous systems (18%). The majority of deaths occurred among the cancer (45%), central nervous system (15%), and metabolic disease groups (14%). By study end date, 24% of children were still alive, 61% died, and 15% transitioned to adult services (more than half of whom were cognitively competent). On average, 1024 days were spent on the CPCH program (median = 301). The majority of inpatient hospice discharges were for respite (82%); only 7% were for end-of-life care. Location of death was shared between CPCH (61%), hospital (22%), and home (16%). CONCLUSIONS: Diagnostic groups largely determine the nature and magnitude of services used, and our involvement with pediatric life-threatening conditions is increasing. Reviews of pediatric palliative programs can help evaluate the services needed by the population served.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2014-0381" target="_blank" rel="noreferrer">10.1542/peds.2014-0381</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).
2014
British Columbia/epidemiology
Chavoshi N
Child
Child Preschool
Cohort Studies
Demographics
Female
Harvey B
Hospice Care
Hospices/methods/trends
Humans
Life Threatening
Male
Miller T
Palliative Care
Palliative Care/methods/trends
Parker A
Patient Care Team/trends
Pediatrics
Pediatrics/methods/trends
Retrospective Studies
Siden H
Survival Rate/trends
Time Factors
-
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
Impact of research participation on parents of seriously ill children.
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
2014
Subject
The topic of the resource
Biomedical Research; Child Health Services; Adolescent; Adult; Child; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Middle Aged; Palliative Care; Parents/psychology; Severity Of Illness Index; Surveys And Questionnaires; Young Adult
Creator
An entity primarily responsible for making the resource
Steele R; Cadell S; Siden H; Andrews GS; Smit QT; Feichtinger L
Description
An account of the resource
BACKGROUND: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns about further burdening families. Yet, there is some evidence that research participation can have positive effects for families. OBJECTIVE: To obtain parents' perceptions about their experience of participating in one of two research studies. DESIGN: Descriptive, quantitative survey. SETTING/SUBJECTS: Caregivers of children with life-threatening conditions (n=323) who were caring for the child at home. MEASUREMENTS: Researcher-designed Impact of Participation questionnaire. RESULTS: Few differences between the two groups were found on Impact responses. Not a single parent reported regretting participating in their study and almost all (96.3%) reported that conducting research about family's experiences in pediatric palliative care had value. Just over three-quarters (76.2%) did not find participation at all painful, and 73.7% reported that participation was about as painful as expected, with 23.2% reporting less painful. Approximately half (50.5%) said that participation had at least some positive effect and only three parents reported any negative effect. An overwhelming majority (93.4%) would recommend participation to other parents in a similar situation. CONCLUSIONS: Participation in research for families with children who have a life-threatening condition is not only acceptable to parents, but may in fact have a positive effect. Although clinicians and Institutional Review Boards may be hesitant to fully support such research, it is clear that conducting research in the field of pediatric palliative care is important.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2013.0529" target="_blank" rel="noreferrer">10.1089/jpm.2013.0529</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).
2014
Adolescent
Adult
Andrews GS
Biomedical Research
Cadell S
Charting the territory
Child
Child Health Services
Child Preschool
Feichtinger L
Female
Humans
Infant
Infant Newborn
Journal of Palliative Medicine
Male
Middle Aged
Palliative Care
Parents/psychology
Severity Of Illness Index
Siden H
Smit QT
Steele R
Surveys And Questionnaires
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.
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
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
The topic of the resource
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>
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).
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
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
Mortality trends for pediatric life-threatening conditions.
Publisher
An entity responsible for making the resource available
The American Journal Of Hospice & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Pediatrics; Adolescent; British Columbia; Cause Of Death; Child; Child Mortality/trends; Child Preschool; Female; Hospice; Hospice Care/statistics & Numerical Data; Humans; Illness; Infant; Infant Newborn; Life-threatening Conditions; Male; Mortality; Palliative; Palliative Care/statistics & Numerical Data; Pediatric
Creator
An entity primarily responsible for making the resource
Chavoshi N; Miller T; Siden H
Description
An account of the resource
Internal data from the sole pediatric hospice in British Columbia were utilized to investigate mortality trends among children dying from life-threatening conditions. Characteristics of the sample (hospice) were compared to that of the population (province) for individuals aged 0 to 18 years from 2002 to 2011. The provincial death rate was 2.30 per 10 000. The sample did not significantly vary with respect to sex and geographic distribution when compared to the population. Infants contributed to a significantly larger proportion of pediatric deaths in the population. Children referred to the hospice were more likely to be diagnosed with cancer and diseases of the nervous system. Only 15% of all pediatric deaths due to disease in the province were cared for by the hospice, calling for the strengthening of interdisciplinary palliative care programs.
Identifier
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<a href="http://doi.org/10.1177/1049909114524476" target="_blank" rel="noreferrer">10.1177/1049909114524476</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).
2014
Adolescent
British Columbia
Cause Of Death
Chavoshi N
Child
Child Mortality/trends
Child Preschool
Female
Hospice
Hospice Care/statistics & Numerical Data
Humans
Illness
Infant
Infant Newborn
Life-threatening Conditions
Male
Miller T
Mortality
Palliative
Palliative Care/statistics & Numerical Data
Pediatric
Pediatrics
Siden H
The American Journal of Hospice & Palliative Care
-
https://d1y502jg6fpugt.cloudfront.net/32554/archive/files/1b1a867b4dfe80570f47e7abce12ee85.pdf?Expires=1712793600&Signature=cSfHKDQJF3A8LNnPosqRyTa2sAYEYia55KStBB-i8pS7vip5bzVZlVcpEKp08qWxARjd7OBCxJcwIPA60ChtHOhjr8j3X0dO0IxQVOZrtubxKKYs%7EQfaFPubkmakKqOKUbnQgIUc-HJVmFb10Qjd3xGjQVkMRm9gyW9HB1rkwxvAW6Ow5UpdaHboGl2h1SKSRUEAqha6u%7EaLynPJK2hWrZec4c1KmzhiIR2aTG4yEm8%7Ejy8KP9stqu0MQRTMNeG3vlXPb3x09IPeVSlKYKRkW4-TgzBGCtmSHEYOFuCTh2SHcLKEou%7EvhsXXiLCTtXuo%7E8zZuJ4RieuQSZfeqoQriw__&Key-Pair-Id=K6UGZS9ZTDSZM
6791fbc481a612cca312171167697076
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 2017 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
Trends in Pediatric Palliative Care 2017; Issue #11
Creator
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Teachman G; Passos dos Santos R; Avery S; Mastorakis K; Noronha C; Singh HK; Macdonald ME
Description
An account of the resource
This commentary brings together perspectives from an interdisciplinary group of researchers –five trainees, a research manager, and a senior scientist –who share an interest in the emergent field of childhood ethics and pediatric palliative care.<br /><br />Feature Article: Marty C. M., Carter B. S. (2017, early online). Ethics and palliative care in the perinatal world, Seminars in Fetal & Neonatal Medicine.<a href="http://dx.doi.org/10.1016/j.siny.2017.09.001" target="_blank" rel="noreferrer">http://dx.doi.org/10.1016/j.siny.2017.09.001</a>
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Article information provided for research and reference use only. Copyright PedPalASCNET.
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<a href="http://pediatricpalliative.com/trends-in-pediatric-palliative-care-2017-issue-11/" target="_blank" rel="noreferrer">http://pediatricpalliative.com/trends-in-pediatric-palliative-care-2017-issue-11/</a>
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PedPalASCNET
Macdonald ME
November 2017 List
-
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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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<a href="https://doi.org/10.1089/jpm.2013.0110" target="_blank" rel="noreferrer">https://doi.org/10.1089/jpm.2013.0110</a>
Notes
<p>1557-7740<br />Chavoshi, Negar<br />Miller, Tanice<br />Siden, Harold<br />Journal Article<br />United States<br />J Palliat Med. 2013 Oct;16(10):1210-4. doi: 10.1089/jpm.2013.0110. Epub 2013 Sep 5.</p>
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Date
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2013
Title
A name given to the resource
Resource Utilization Among Individuals Dying Of Pediatric Life-threatening Diseases
Publisher
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Journal Of Palliative Medicine
Subject
The topic of the resource
Terminal Care; Adolescent; British Columbia; Child; Child Preschool; Female; Health Resources/ Utilization; Health Services Needs And Demand; Humans; Infant; Infant Newborn; Length Of Stay/statistics & Numerical Data; Male; Patient Discharge/statistics & Numerical Data; Young Adult
Creator
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Chavoshi N; Miller T; Siden H
Description
An account of the resource
BACKGROUND AND OBJECTIVES: Very little information exists on the number of resources utilized by individuals living with and dying of pediatric life-threatening diseases (LTDs). This study quantifies end of life (EOL) resource utilization among the pediatric population in British Columbia, Canada. METHODS: Data from Vital Statistics British Columbia were obtained for the pediatric population that died between 2002/03 and 2006/07. Our sample included three age groups: less than 1 year (excluding sudden infant death syndrome cases), 1 to 19 years, and 20 to 24 years. Using data from the Medical Services Plan and Discharge Abstract Database, we calculated annual rates of resources utilized (number of discharges, number of days in hospital, and number of medical services used) for every pediatric death that was due to an LTD in our selected 5-year time frame. Place of death was also explored. RESULTS: During the fiscal year of death and the fiscal year prior to death, children/adolescents and young adults dying of a pediatric LTD respectively experienced 5.3 and 3.7 hospital discharges, spent 48 and 39 days in the hospital, and required approximately 222 and 230 medical services. Infants were discharged once on average, and required 21 medical services. CONCLUSIONS: Resource utilization was very high for all three age groups, demonstrating the intense need for care by children dying of disease. These findings call for the strengthening of palliative care services in the province.
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<a href="https://doi.org/10.1089/jpm.2013.0110" target="_blank" rel="noreferrer"> 10.1089/jpm.2013.0110</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).
2013
Adolescent
British Columbia
Chavoshi N
Child
Child Preschool
Female
Health Resources/ Utilization
Health Services Needs And Demand
Humans
Infant
Infant Newborn
Journal of Palliative Medicine
Length Of Stay/statistics & Numerical Data
Male
Miller T
Patient Discharge/statistics & Numerical Data
Resource Utilization Among Individuals Dying Of Pediatric Life-threatening Diseases
Siden H
Terminal Care
Young Adult
-
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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URL Address
<a href="https://doi.org/10.1097/NJH.0b013e3182765a2a" target="_blank" rel="noreferrer">https://doi.org/10.1097/NJH.0b013e3182765a2a</a>
Notes
<p>Davies, Betty<br />Baird, Jennifer<br />Gudmundsdottir, Maria<br />F31 NR012093/NR/NINR NIH HHS/United States<br />R01 NR009430/NR/NINR NIH HHS/United States<br />Journal Article<br />United States<br />J Hosp Palliat Nurs. 2013 May 1;15(3). doi: 10.1097/NJH.0b013e3182765a2a.</p>
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Date
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2013
Title
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Moving Family-centered Care Forward: Bereaved Fathers' Perspectives
Publisher
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Journal Of Hospice And Palliative Nursing
Subject
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Bereaved Fathers; Family-centered Care; Pediatric Health Care Providers Behaviors
Creator
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Davies B; Baird J; Gudmundsdottir M
Description
An account of the resource
This paper describes the key behaviors of "excellent" pediatric healthcare providers - a term used by fathers of children with complex, life-threatening illness to describe providers who consistently and effectively engage in family-centered care for children and their families. Using interview data from a multi-site grounded theory study of 60 fathers with a deceased child, five behaviors were identified: getting to know the family as individuals, talking about non-healthcare related topics, connecting in a human-human relationship, including parents as team members, and applying specialized knowledge to help the family. These behaviors are consistent with the goals of family-centered care, but they are inconsistently practiced, resulting in less-than-optimal care for children and their families during periods of crisis and vulnerability. A renewed focus on relationship building and interactions with families is needed, as well as a re-evaluation of the training of pediatric healthcare providers.
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<a href="https://doi.org/10.1097/NJH.0b013e3182765a2a" target="_blank" rel="noreferrer">10.1097/NJH.0b013e3182765a2a</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).
2013
Baird J
Bereaved Fathers
Davies B
Family-centered Care
Gudmundsdottir M
Journal of Hospice and Palliative Nursing
Moving Family-centered Care Forward: Bereaved Fathers' Perspectives
Pediatric Health Care Providers Behaviors
-
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.
URL Address
<a href="https://doi.org/10.1016/j.jpainsymman.2011.10.017" target="_blank" rel="noreferrer">https://doi.org/10.1016/j.jpainsymman.2011.10.017</a>
Notes
<p>1873-6513<br />Gilmer, Mary Jo<br />Foster, Terrah L<br />Vannatta, Kathryn<br />Barrera, Maru<br />Davies, Betty<br />Dietrich, Mary S<br />Fairclough, Diane L<br />Grollman, Jamie<br />Gerhardt, Cynthia A<br />R01 CA098217/CA/NCI NIH HHS/United States<br />R01 CA98217/CA/NCI NIH HHS/United States<br />Journal Article<br />Research Support, N.I.H., Extramural<br />United States<br />J Pain Symptom Manage. 2012 Oct;44(4):572-82. doi: 10.1016/j.jpainsymman.2011.10.017. Epub 2012 Jul 10.</p>
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Date
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2012
Title
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Changes In Parents After The Death Of A Child From Cancer
Publisher
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Journal Of Pain And Symptom Management
Subject
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Adaptation Psychological; Bereavement; Death; Adult; Canada; Child; Emotions; Family/ Psychology; Female; Humans; Male; Parents/ Psychology; Siblings/psychology; United States
Creator
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Gilmer MJ; Foster TL; Vannatta K; Barrera M; Davies B; Dietrich MS; Fairclough DL; Grollman J; Gerhardt CA
Description
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CONTEXT: Few studies have compared multiple perspectives of changes experienced by parents after a child's death. OBJECTIVES: This study used interviews with bereaved parents and siblings to examine changes in parents during the first year after the death of a child from cancer. METHODS: Mothers (n=36), fathers (n=24), and siblings (n=39) from 40 families were recruited from three hospitals in the U.S. and Canada three to 12 months after the death (M=10.7, SD=3.5). Semistructured interviews with open-ended questions were conducted in the home with each participating parent and sibling separately. Content analysis identified emerging themes, and frequencies were compared between each paired set of reports (mother vs. sibling, father vs. sibling, and mother vs. father). RESULTS: Parents and siblings identified two major categories of change experienced by bereaved parents. These changes occurred in their personal lives (e.g., emotions, perspectives and priorities, physical state, work habits, coping/behaviors, spiritual beliefs, and feeling something is missing) and relationships (e.g., family, others). Ninety-four percent of the mothers, 87% of the fathers, and 69% of the siblings reported parental changes in at least one of these categories. Parents were more likely to report changes in priorities, whereas siblings reported more sadness in parents after the death. CONCLUSION: Positive and negative changes in parents after the death of a child from cancer occur in both personal and relational domains. Additional research is needed to determine the impact of a child's death on bereaved parents over time and to develop strategies to promote healthy adjustment.
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<a href="https://doi.org/10.1016/j.jpainsymman.2011.10.017" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2011.10.017</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).
2012
Adaptation Psychological
Adult
Barrera M
Bereavement
Canada
Changes In Parents After The Death Of A Child From Cancer
Child
Davies B
Death
Dietrich MS
Emotions
Fairclough DL
Family/ Psychology
Female
Foster TL
Gerhardt CA
Gilmer MJ
Grollman J
Humans
Journal of Pain and Symptom Management
Male
Parents/ Psychology
Siblings/psychology
United States
Vannatta K
-
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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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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>
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Date
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2011
Title
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Differences On Psychosocial Outcomes Between Male And Female Caregivers Of Children With Life-limiting Illnesses
Publisher
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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
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Schneider M; Steele R; Cadell S; Hemsworth D
Description
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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
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<a href="https://doi.org/10.1016/j.pedn.2010.01.007" target="_blank" rel="noreferrer">10.1016/j.pedn.2010.01.007</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).
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
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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="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3805346/" target="_blank" rel="noreferrer">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3805346/</a>
Notes
<p>1918-1523<br />Siden, Harold B<br />Carleton, Bruce C<br />Oberlander, Tim F<br />Clinical Trial<br />Journal Article<br />Research Support, Non-U.S. Gov't<br />United States<br />Pain Res Manag. 2013 Sep-Oct;18(5):243-8. Epub 2013 Jul 24.</p>
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Date
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2013
Title
A name given to the resource
Physician Variability In Treating Pain And Irritability Of Unknown Origin In Children With Severe Neurological Impairment
Publisher
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Pain Research & Management
Subject
The topic of the resource
Adolescent; Analgesics/ Therapeutic Use; Child; Developmental Disabilities/ Complications; Female; Humans; Male; Pain/complications/ Drug Therapy; Pain Management/ Methods; Pilot Projects; Practice Patterns Physicians'/ Statistics & Numerical Data
Creator
An entity primarily responsible for making the resource
Siden H; Carleton BC; Oberlander TF
Description
An account of the resource
BACKGROUND: Pain and irritability of unknown origin (PIUO) is a challenging problem for nonverbal children with severe neurological impairments. PIUO is not associated with an identifiable source of nociceptive-inflammatory or neuropathic pain. OBJECTIVE: To assess how physicians use pharmacotherapy to treat PIUO, and to report a pilot study of a standardized approach to investigating and treating PIUO. METHOD: Part 1 of the present study involved independently presenting a case vignette of a patient with PIUO to six experienced physicians who care for children with neurological impairments. They were asked for medication choices and sequences to empirically treat PIUO. Part 2 was a pilot study of a PIUO protocol. Patients followed a standard pathway for PIUO, referred to as the pathway for unknown pain (PUP). The initial drug sequence for the PUP was based on Part 1. RESULTS: In Part 1, physicians responding to the case vignette listed eight medications (atypical antipsychotics, benzodiazepines, gabapentin, methadone, opioids, selective serotonin reuptake inhibitors, tramadol and tricylic antidepressants) and eight empiric drug sequences. In Part 2, eight children with PIUO (six to 17 years of age; five females, three males) were enrolled in a pilot clinic. Only two had been fully evaluated for nociceptive-inflammatory pain sources before enrollment. At the end of the pilot study, four patients were clinically improved and only three required a study medication. DISCUSSION AND CONCLUSION: Even experienced physicians do not agree on a common approach for medical treatment of PIUO. A standardized pathway is feasible and readily implemented. The proposed PUP has the potential to address PIUO and be the basis for future intervention studies.
Identifier
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<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3805346/" target="_blank" rel="noreferrer">PMC3805346/</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).
2013
Adolescent
Analgesics/ Therapeutic Use
Carleton BC
Child
Developmental Disabilities/ Complications
Female
Humans
Male
Oberlander TF
Pain and Irritability Project
Pain Management/ Methods
Pain Research & Management
Pain/complications/ Drug Therapy
Physician Variability In Treating Pain And Irritability Of Unknown Origin In Children With Severe Neurological Impairment
Pilot Projects
Practice Patterns Physicians'/ Statistics & Numerical Data
Siden H
-
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.
URL Address
<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2735380/" target="_blank" rel="noreferrer">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2735380/</a>
Notes
<p>1918-1485<br />Siden, Harold<br />Straatman, Lynn<br />Miller, Tanice<br />Ham, Jennifer<br />Journal Article<br />Canada<br />Paediatr Child Health. 2009 Jul;14(6):379-84.</p>
Dublin Core
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Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Title
A name given to the resource
The Madison Clinic: Evaluation Of A Collaborative Outpatient Paediatric Palliative Care Clinic
Publisher
An entity responsible for making the resource available
Paediatrics & Child Health
Subject
The topic of the resource
Ambulatory Care Facilities; Continuity Of Patient Care; Paediatrics; Palliative Care
Creator
An entity primarily responsible for making the resource
Siden H; Straatman L; Miller T; Ham J
Description
An account of the resource
BACKGROUND: A multidisciplinary outpatient clinic at a tertiary care children's hospital supported and staffed by a children's hospice was created to enhance and expand the inpatient palliative care services available to families of children with life-limiting conditions. This clinic was created with input from clinicians, program leaders and families in developing the goals and format. METHOD: The clinic was evaluated with indicators that included program data from palliative care consultations. This information was collected and recorded on a prospective basis. RESULTS: In the first 29 months of operation, 43 clinics were held, 39 individual patients were seen and there were 59 visits. The majority of visits were for pain and symptom management (75%), while 20% were for assessment for the hospice program. The hospice-palliative care team also provided telephone support, videoconference support and inpatient consultations. Patients reported overall satisfaction with their experiences at the clinic. DISCUSSION: A major benefit of this outpatient palliative care clinic is its ability to offer continuity of care for patients and their families. It also serves as a preliminary introduction to palliative care, particularly significant for families who are not yet ready to learn about or engage in the full hospice program.
Identifier
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<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2735380/" target="_blank" rel="noreferrer">PMC2735380</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).
2009
Ambulatory Care Facilities
Continuity Of Patient Care
Ham J
Miller T
Paediatrics
Paediatrics & Child Health
Palliative Care
Siden H
Straatman L
The Madison Clinic: Evaluation Of A Collaborative Outpatient Paediatric Palliative Care Clinic
-
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.
URL Address
<a href="https://www.ncbi.nlm.nih.gov/pubmed/19824283" target="_blank" rel="noreferrer">https://www.ncbi.nlm.nih.gov/pubmed/19824283</a>
Notes
<p>Siden, Harold<br />Tucker, Tara<br />Derman, Sarah<br />Cox, Kelly<br />Soon, Gordon S<br />Hartnett, Carol<br />Straatman, Lynn<br />Journal Article<br />United States<br />J Palliat Care. 2009 Autumn;25(3):213-7.</p>
Dublin Core
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Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Title
A name given to the resource
Pediatric Enteral Feeding Intolerance: A New Prognosticator For Children With Life-limiting Illness?
Publisher
An entity responsible for making the resource available
Journal Of Palliative Care
Subject
The topic of the resource
Child; Child Preschool; Enteral Nutrition/ Adverse Effects; Female; Humans; Infant; Male; Prognosis; Terminal Care/ Methods
Creator
An entity primarily responsible for making the resource
Siden H; Tucker T; Derman S; Cox K; Soon GS; Hartnett C; Straatman L
Identifier
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<a href="https://www.ncbi.nlm.nih.gov/pubmed/19824283" target="_blank" rel="noreferrer">19824283</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).
2009
Child
Child Preschool
Cox K
Derman S
Enteral Nutrition/ Adverse Effects
Female
Hartnett C
Humans
Infant
Journal Of Palliative Care
Male
Pediatric Enteral Feeding Intolerance: A New Prognosticator For Children With Life-limiting Illness?
Prognosis
Siden H
Soon GS
Straatman L
Terminal Care/ Methods
Tucker T
-
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.
URL Address
<a href="https://doi.org/10.1186/1472-6963-11-343" target="_blank" rel="noreferrer">https://doi.org/10.1186/1472-6963-11-343</a>
Notes
<p>1472-6963<br />Siden, Harold<br />Urbanoski, Karen<br />PET-69769/Canadian Institutes of Health Research/Canada<br />Journal Article<br />Research Support, Non-U.S. Gov't<br />England<br />BMC Health Serv Res. 2011 Dec 16;11:343. doi: 10.1186/1472-6963-11-343.</p>
Dublin Core
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Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Title
A name given to the resource
Using Network Analysis To Map The Formal Clinical Reporting Process In Pediatric Palliative Care: A Pilot Study
Publisher
An entity responsible for making the resource available
Bmc Health Services Research
Subject
The topic of the resource
Community-institutional Relations; Continuity Of Patient Care; Hospice Care; Palliative Care; Pediatrics; British Columbia; Humans; Models Theoretical; Pilot Projects; Risk Management/ Organization & Administration
Creator
An entity primarily responsible for making the resource
Siden H; Urbanoski K
Description
An account of the resource
BACKGROUND: Continuity of care is a key component of care in complex and chronic conditions. Despite its importance, it is often absent in chronic-disease management. One challenge has been identifying tools to measure care continuity. In one context important to families, namely pediatric palliative care, we undertook a project to identify continuity and to pilot the use of network analysis as a tool. METHODS: Network analysis studies patterns of relationships or interactions between members, providing qualitative and quantitative description of network structure. RESULTS: In this report we applied network analysis to paper records of clinical consultations and reports for 6 patients with complex conditions. A high degree of discontinuity was identified, and care was fragmented amongst specialist and generalist providers. Information was shared selectively and often moved in only one direction. CONCLUSIONS: Families have anecdotally reported frustration with poor continuity of care. Network analysis can be a useful tool in describing the discontinuity of care experienced by families dealing with complex and chronic conditions. This tool could be expanded to other systems such as electronic health records and many other health care situations.
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<a href="https://doi.org/10.1186/1472-6963-11-343" target="_blank" rel="noreferrer">10.1186/1472-6963-11-343</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).
2011
BMC Health Services Research
British Columbia
Community-institutional Relations
Continuity Of Patient Care
Hospice Care
Humans
Models Theoretical
Palliative Care
Pediatrics
Pilot Projects
Risk Management/ Organization & Administration
Siden H
Urbanoski K
Using Network Analysis To Map The Formal Clinical Reporting Process In Pediatric Palliative Care: A Pilot Study
-
https://d1y502jg6fpugt.cloudfront.net/32554/archive/files/cacee21b5d5131ea60c92e175c8c6d34.pdf?Expires=1712793600&Signature=FYjEagVmR9EaG31u9876bRDgpkKs1u%7EJB8MvUidLAq%7E2VNwhlLchOu-wLWk9NTqFech7A7a%7Et5P1F4WN%7EvYtarxxVB-UYEcD%7ErdxA4NH-JiX5HcXWysOSsO6inzEs5quWVdopkGhC4rOW-jXh2n7ibccmicLl70iFSAzIIJQ5%7Ee6KW04-DvrGa2po9RbrHXLNtc1rh9NpKLs3dCCdmyKCebzMSCjFJG8aT1V1n3Bz0ALGioUefE%7E0FIoYrApl0bblwQ9QkosuyoiSZwtqZ7o7v46BY-BG5pJoO0iMiSFECVAedKcJghOWcHb2Lw-LuxnwYn6Tz%7EuxK7saZMekzTYoA__&Key-Pair-Id=K6UGZS9ZTDSZM
112413635b1c6539f94e0fcd5972071f
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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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Title
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Lexicon of Terms in Pediatric Palliative Care
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Spicer S, MacDonald ME, Vadeboncoeur C, Davies D, Siden H
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PedPalASCNET
Description
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This Lexicon has been developed through a collaborative process by the PedPalASCNET network members as a tool for clinicians and researchers to standardize the usage of common terms in the field of pediatric palliative care. The Lexicon reflects the use of these words in Canada in the context of care for children with chronic complex and life-threatening conditions.
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© PedPalASCNET
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2014
2014
Davies D
Macdonald ME
Siden H
Spicer S
Vadeboncoeur C
-
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PedPalASCNet Member Publications
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Text
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<a href="http://midnurse.umsha.ac.ir/uploads/Pediatric_Palliative_Care_Global_Perspectives.pdf" target="_blank" rel="noreferrer">http://midnurse.umsha.ac.ir/uploads/Pediatric_Palliative_Care_Global_Perspectives.pdf</a>
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Title
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Pediatric palliative care in Canada
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Widger K, Cadell S, Davies B, Siden H, Steele R
Date
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2012
Description
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In Knapp, Madden & Fowler-Kerry (Eds.) Pediatric Palliative Care: Global Perspectives. Springer Publishing, 301-321.
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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).
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In Knapp, Madden & Fowler-Kerry (Eds.) Pediatric Palliative Care: Global Perspectives. Springer Publishing, 301-321.
Publisher
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Springer Publishing
2012
Cadell S
Davies B
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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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://books.google.ca/books?id=rAZiOwTY7uUC&pg=PA96&lpg=PA96&dq=Research+considerations+in+pediatric+palliative+care&source=bl&ots=_2LYGGhnZ4&sig=MgUIcBYf0kZ0cA6V0dlzn3L--6w&hl=en&sa=X&ved=0ahUKEwjdsK2d56bRAhUG8GMKHZqtB9AQ6AEIRTAH#v=onepage&q=Research%20considerations%20in%20pediatric%20palliative%20care&f=false" target="_blank" rel="noreferrer">https://books.google.ca/books?id=rAZiOwTY7uUC&pg=PA96&lpg=PA96&dq=Research+considerations+in+pediatric+palliative+care&source=bl&ots=_2LYGGhnZ4&sig=MgUIcBYf0kZ0cA6V0dlzn3L--6w&hl=en&sa=X&ved=0ahUKEwjdsK2d56bRAhUG8GMKHZqtB9AQ6AEIRTAH#v=onepage&q=Research%20considerations%20in%20pediatric%20palliative%20care&f=false</a>
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Research considerations in pediatric palliative care
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Davies B; Widger K; Steele R; Cadell S; Siden H; Straatman L
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New York: Elsevier
Date
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2011
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In Wolff J, Sourkes B, & Hinds P (Eds.) Textbook of Interdisciplinary Pediatric Palliative Care, First Edition. New York: Elsevier, 96-103.
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
Cadell S
Davies B
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
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
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Children in palliative medicine: An overview
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Davies B; Siden H
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Oxford: Oxford University Press
Date
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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