1
40
89
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
September 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September List 2023
URL Address
<a href="http://doi.org/10.1186/s12887-023-04186-9%5C"> http://doi.org/10.1186/s12887-023-04186-9\</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
Intensity of end-of-life care among children with life-threatening conditions: a national population-based observational study
Publisher
An entity responsible for making the resource available
BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Child; Only Child; Terminal Care
Creator
An entity primarily responsible for making the resource
Widger K; Brennenstuhl S; Nelson KE; Seow H; Rapoport A; Siden H; Vadeboncoeur C; Gupta S; Tanuseputro P
Description
An account of the resource
Background Children with life-threatening conditions frequently experience high intensity care at the end of life, though most of this research only focused on children with cancer. Some research suggests inequities in care provided based on age, disease type, socioeconomic status, and distance that the child lives from a tertiary hospital. We examined: 1) the prevalence of indicators of high intensity end-of-life care (e.g., hospital stays, intensive care unit [ICU] stays, death in ICU, use of cardiopulmonary resuscitation [CPR], use of mechanical ventilation) and 2) the association between demographic and diagnostic factors and each indicator for children with any life-threatening condition in Canada. Methods We conducted a population-based retrospective cohort study using linked health administrative data to examine care provided in the last 14, 30, and 90 days of life to children who died between 3 months and 19 years of age from January 1, 2008 to December 31, 2014 from any underlying life-threatening medical condition. Logistic regression was used to model the association between demographic and diagnostic variables and each indicator of high intensity end-of-life care except number of hospital days where negative binomial regression was used. Results Across 2435 child decedents, the most common diagnoses included neurology (51.1%), oncology (38.0%), and congenital illness (35.9%), with 50.9% of children having diagnoses in three or more categories. In the last 30 days of life, 42.5% (n = 1035) of the children had an ICU stay and 36.1% (n = 880) died in ICU. Children with cancer had lower odds of an ICU stay (OR = 0.47; 95% CI = 0.36–0.62) and ICU death (OR = 0.37; 95%CI = 0.28–0.50) than children with any other diagnoses. Children with 3 or more diagnoses (vs. 1 diagnosis) had higher odds of > 1 hospital stay in the last 30 days of life (OR = 2.08; 95%CI = 1.29–3.35). Living > 400 km (vs < 50 km) from a tertiary pediatric hospital was associated with higher odds of multiple hospitalizations (OR = 2.09; 95%CI = 1.33–3.33). Conclusion High intensity end of life care is prevalent in children who die from life threatening conditions, particularly those with a non-cancer diagnosis. Further research is needed to understand and identify opportunities to enhance care across disease groups.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12887-023-04186-9%5C">10.1186/s12887-023-04186-9\</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).
2023
Bmc Pediatrics
Brennenstuhl S
Child
Gupta S
Nelson KE
Only Child
Rapoport A
Seow H
September List 2059
Siden H
Tanuseputro P
Terminal Care
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
2023 Special Edition 2 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2031 SE2 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1093/jpepsy/jsw053" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1093/jpepsy/jsw053</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 of children with a complex chronic health condition: Maternal posttraumatic growth as a predictor of changes in child behavior problems
Publisher
An entity responsible for making the resource available
Journal of Pediatric Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Behavior Problems; child behavior problems; Chronic Illness; complex chronic conditions; families; Family; Palliative Care; pediatric palliative care; Pediatrics; posttraumatic growth; Posttraumatic Growth; siblings; Siblings
Creator
An entity primarily responsible for making the resource
Stephenson E; DeLongis A; Steele R; Cadell S; Andrews GS; Siden H
Description
An account of the resource
Objective: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. Methods: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports. At each visit, mothers also completed self-reports of posttraumatic growth. Results: Time-lagged multilevel regression analyses revealed that higher levels of maternal posttraumatic growth predicted subsequent declines in parent-reported internalizing, externalizing, and total behavior problems among healthy siblings. These findings were partially replicated using youth self-reports of their own behavior problems. Conclusion: The findings suggest that the benefits of posttraumatic growth may extend beyond the self to other family members, particularly to children in the family. (PsycINFO Database Record (c) 2017 APA, all rights reserved)
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/jpepsy/jsw053" target="_blank" rel="noreferrer noopener">10.1093/jpepsy/jsw053</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
2031 SE2 - Parent Perspectives
Andrews GS
behavior problems
Cadell S
Child Behavior Problems
Chronic Illness
Complex Chronic Conditions
DeLongis A
Families
Family
Journal of Pediatric Psychology
Palliative Care
Pediatric Palliative Care
Pediatrics
Posttraumatic Growth
Siblings
Siden H
Steele R
Stephenson E
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
June 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2022 List
URL Address
<a href="https://www.cmajopen.ca/content/11/2/E298">https://www.cmajopen.ca/content/11/2/E298</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
Location of death among children with life-threatening conditions: a national population-based observational study using the Canadian Vital Statistics Database (2008-2014)
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
2023
Subject
The topic of the resource
Humans; Child; Retrospective Studies; Infant Newborn; Hospital Mortality; Ontario; Palliative Care; Hospitalization; Only Child
Creator
An entity primarily responsible for making the resource
Widger K; Brennenstuhl S; Tanuseputro P; Nelson KE; Rapoport A; Seow H; Siden H; Vadeboncoeur C; Gupta S
Description
An account of the resource
BACKGROUND: Patterns in location of death among children with life-threatening conditions (e.g., cancer, genetic disorders, neurologic conditions) may reveal important inequities in access to hospital and community support services. We aimed to identify demographic, socioeconomic and geographic factors associated with variations in location of death for children across Canada with life-threatening conditions. METHODS: We used a retrospective observational cohort design and the Canadian Vital Statistics Database to identify children aged 19 years or younger who died from a life-threatening condition between Jan. 1, 2008, and Dec. 31, 2014. We used multivariable logistic regression to determine predictors of in-hospital death for children aged 1 month to 19 years, and for neonates younger than 1 month. RESULTS: Overall, 13 115 decedents younger than 19 years had life-threatening conditions. Of 5250 children and 7865 neonates, 74.2% and 98.1%, respectively, died in hospital. Among children, we found a higher proportion of hospital deaths in the lowest (v. highest) income quintile (odds ratio [OR] 1.59, 95% confidence interval [CI] 1.28-1.97), and a lower proportion among children living more than 400 km (v. < 50 km) from a pediatric hospital (OR 0.73, 95% CI 0.65-0.86). Compared with Ontario, hospital death was most common in Quebec (OR 1.38, 95% CI 1.14-1.67) and least common in British Columbia (OR 0.43, 95% CI 0.34-0.53). Compared with an oncologic cause of death, all causes except neurologic and metabolic conditions had significantly higher odds of dying in hospital. INTERPRETATION: In addition to demographics, we identified socioeconomic and geographic differences in location of death, suggesting potential inequities in access to high-quality care at the end of life. Health care policies and practices must ensure equitable access to services for children across Canada, particularly at the end of their life.
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).
Identifier
An unambiguous reference to the resource within a given context
<a href="https://www.cmajopen.ca/content/11/2/E298">10.9778/cmajo.20220070</a>
2023
Brennenstuhl S
Child
Cmaj Open
Gupta S
Hospital Mortality
Hospitalization
Humans
Infant Newborn
June 2022 List
Nelson KE
Only Child
Ontario
Palliative Care
Rapoport A
Retrospective Studies
Seow H
Siden H
Tanuseputro P
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 Posters
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Contributions and recognition of patient partners in pediatric health research: a rapid scoping review protocol
Creator
An entity primarily responsible for making the resource
Pawliuk C; Hermansen AM; Barrans C; Siden H
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.31219/osf.io/svztf">10.31219/osf.io/svztf</a>
Publisher
An entity responsible for making the resource available
OSF Preprints
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Description
An account of the resource
Objective: The objective of this rapid scoping review is to: 1) assess the prevalence of acknowledgement and authorship of patient partners in pediatric health research; 2) understand how patient partners contribute through the research process; and 3) assess how patient engagement is identified in publications.
Introduction: Patient-Oriented Research (POR) is an area of increasing interest and activity, with growing funding opportunities. Patient partners with significant contributions to a research project may be eligible for formal acknowledgment or authorship, however locating patient-engaged studies is difficult and time consuming, so there is little understanding of the prevalence of patient partner acknowledgement or authorship and how patient partners typically contribute to research projects.
Inclusion criteria: This rapid scoping review will consider evidence sources that investigate topics related to pediatric patients aged (0-19 years) and that include acknowledgement or descriptions of one or more patient partner(s) contributions in one or more studies. We will exclude sources that include non-pediatric patients, are not in English, and not published in full in a journal (e.g. conference abstracts).
Methods: We will search MEDLINE (Ovid), Embase (Ovid) and CINAHL (EBSCOhost). In addition, we will search key sources of POR literature. To increase the rapidity of this review, only 25% of sources will be reviewed and extracted by two team members and the remaining sources will be screened and extracted by a single reviewer. Data will be extracted using a data extraction tool developed by the reviewers. The results will be presented in a tabular/and/or charted format and accompanied by a narrative summary describing how the results related to the review objectives and questions.
acknowledgement
Authorship
Barrans C
Hermansen AM
patient and public involvement
patient partner
Patient Partner Recognition
patient-oriented research
Pawliuk C
Preprint
protocol
rapid review
Scoping review
Siden H
-
https://d1y502jg6fpugt.cloudfront.net/32554/archive/files/ad8d18ae1130f7687deb1d2f7f8ac343.pdf?Expires=1712793600&Signature=Mgncstyi7nDnC6z6Z2f5SoiMaOWuAaxEjIb9GOZl3-VMxamYBZZXasLg7wQOrSEHQX9TDumnm1yEHf5p66T8VlSGxU08I1wR7LBD-PgU7p34HgCRCBxY755fgpzZOxbmwKB8Q4I0r78ajicPer4l2c3xe8n8BmSc7FSDwezrZX59ZakKAU%7EJwsPtKVVMqF%7EwsSANbzWdKjOvPdSC6eZk3CkQ3h6cps8FH36Q9FZ0mhLoyRDIWsqQOTnhqyyUr6K397mVKTGRph2tEB%7E-oJIEucxsJoJ6KW3Ga4%7EGf9y1J1loP7EfSdWelR19VYWuahNNMZfgWZ1-vH2a%7E2LtYyPbVA__&Key-Pair-Id=K6UGZS9ZTDSZM
138071d0c806b737f1847b68cf7ecdd6
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
Optimizing the Management of Pain and Irritability in Children with Severe Neurological Impairment: Phase I (Poster)
Creator
An entity primarily responsible for making the resource
Lim E; Siden H; Dewan T; Gnanakumar V; Orkin J; Richardson A; Vadeboncoeur C; Holsti L; Oberlander T; Andrews G
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Rights
Information about rights held in and over the resource
<span>Article information provided for research and reference use. It is licensed under the Creative Commons License: </span><a href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)</a>
Andrews G
Dewan T
Gnanakumar V
Holsti L
Lim E
Oberlander T
Orkin J
PIUO
poster
Richardson A
Siden H
Vadeboncoeur C
-
https://d1y502jg6fpugt.cloudfront.net/32554/archive/files/bae0848f9d5094f89e6c21bc0d30dc60.pdf?Expires=1712793600&Signature=qKiF9eua8fdYjm3Vq1-k9siwXdDeD9OkknI8jl2Ke%7ERnsWILUYlAKpER2Mm2Bdfs%7E7ldU9GBkiowzfZL1Htb5fHlD8pv6mekSSjT%7EkSc9vt97y0Fm1Ui6zcwdP49zsC8Y8Nu8qwL1RxeOWoAUnxQ1Xj7GOVgnFcahGbGR4pv6rw9MhHczay1v1pizlmr9lwL90GJpc98F-AleBRflRct5trLOZMoVllznut%7EGbdkfIZ4mrQFsDsZi8yIvDE5feeRYjy0Fm%7EPipaeZLQdBqsJuRYvAvoNYVJmRKyeqxgdsvxcTm%7E-Q6FkVmzTF53xb33oOtOFyJUJmYVmnzyXmyA5aQ__&Key-Pair-Id=K6UGZS9ZTDSZM
9022ebc75a87a2f978c7cdde53235c70
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
Exploring what motivates parents of children living with medical complexity to participate in research studies: An Interpretive Phenomenology study (Poster)
Creator
An entity primarily responsible for making the resource
Kim L; Siden H; Cook K; Hermansen AM
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Rights
Information about rights held in and over the resource
<span>Article information provided for research and reference use. It is licensed under the Creative Commons License: </span><a href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)</a>
2022
Cook K
Hermansen AM
Kim L
Motivations Study
Parent Participation
Siden H
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1136/bmjebm-2020-111452" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjebm-2020-111452</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
Optimising the process for conducting scoping reviews
Publisher
An entity responsible for making the resource available
BMJ Evidence-Based Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Evidence-Based Medicine; Humans; information science; Publications; Research Design; Q3 Scoping Review
Creator
An entity primarily responsible for making the resource
Pawliuk C; Brown HL; Widger K; Dewan T; Hermansen AM; Grégoire MC; Steele R; Siden H
Description
An account of the resource
Knowledge synthesis constitutes a key part of evidence-based medicine and a scoping review is a type of knowledge synthesis that maps the breadth of literature on a topic. Conducting a scoping review is resource intensive and, as a result, it can be challenging to maintain best practices throughout the process. Much of the current guidance describes a scoping review framework or broad ways to conduct a scoping review. However, little detailed guidance exists on how to complete each stage to optimise the process. We present five recommendations based on our experience when conducting a particularly challenging scoping review: (1) engage the expertise of a librarian throughout the process, (2) conduct a truly systematic search, (3) facilitate communication and collaboration, (4) explore new tools or repurpose old ones, and (5) test every stage of the process. These recommendations add to the literature by providing specific and detailed advice on each stage of a scoping review. Our intent is for these recommendations to aid other teams that are undertaking knowledge synthesis projects.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjebm-2020-111452" target="_blank" rel="noreferrer noopener">10.1136/bmjebm-2020-111452</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
BMJ Evidence-Based Medicine
Brown HL
Dewan T
Evidence-based Medicine
Grégoire MC
Hermansen AM
Humans
information science
Pawliuk C
Publications
Q3 Scoping Review
Research Design
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
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1186/s12887-022-03632-4" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12887-022-03632-4</a>
Dublin Core
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
Evaluation of children with severe neurological impairment admitted to hospital with pain and irritability
Publisher
An entity responsible for making the resource available
BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Adolescent; Child; Child, Preschool; Children; Clinical pathway; Emergency Service, Hospital; Hospitalization; Hospitals, Pediatric; Humans; Infant; Infant, Newborn; Pain; Retrospective Studies; Severe neurological impairment; PIUO
Creator
An entity primarily responsible for making the resource
Fishman I; Siden H; Vadeboncoeur C
Description
An account of the resource
BACKGROUND: Pain is the most common symptom reported by caregivers of children with severe neurological impairment (SNI), a descriptive term for children with disorders affecting the neurological system across multiple domains. In SNI, cognition, communication, and motor skills are impaired and other organ systems are impacted. Pain is difficult to identify and treat in children with SNI because of communication impairment. When a clear cause of pain is not determined, the term "Pain and Irritability of Unknown Origin (PIUO)" is used to describe pain-like behaviours. This study explores the clinical care received by children with SNI admitted to hospital after presenting to the emergency department of a tertiary pediatric hospital with pain or irritability. Findings are compared to the approach suggested in the PIUO pathway, an integrated clinical pathway for identifying and treating underlying causes of pain and irritability in children with complex conditions and limited communication. METHODS: Retrospective chart review of children (age 0 to 18 years inclusive) with diagnoses compatible with SNI presenting with pain, irritability, and/or unexplained crying that required hospitalization between January 1st, 2019 and December 31st, 2019. Descriptive statistics were used to analyze the clinical care received by children in whom a source of pain was identified or not. In children for whom no cause of pain was identified, investigations completed were compared to the PIUO pathway. RESULTS: Eight hospital admissions of six unique children were included for data analysis. A cause for pain and irritability was identified and resolved in three patients. In children with PIUO, there were gaps in history taking, physical examination, and investigations that might have allowed a cause of pain and irritability to be found. Pain was assessed using the r-FLACC pain scale and varying medications for pain/irritability were given during each hospital admission. CONCLUSION: Children with SNI admitted to a tertiary pediatric hospital did not undergo a standardized approach to identifying a cause of pain and irritability. Future efforts should explore the effectiveness of the PIUO pathway, a standardized approach to reducing and resolving pain in children with SNI.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12887-022-03632-4" target="_blank" rel="noreferrer noopener">10.1186/s12887-022-03632-4</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Adolescent
Bmc Pediatrics
Child
Child, Preschool
Children
Clinical pathway
Emergency Service, Hospital
Fishman I
Hospitalization
Hospitals, Pediatric
Humans
Infant
Infant, Newborn
Pain
PIUO
Retrospective Studies
severe neurological impairment
Siden H
Vadeboncoeur C
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1093/pch/pxaa031" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1093/pch/pxaa031</a>
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
Efficacy and safety of paediatric medicinal cannabis use: A scoping review
Publisher
An entity responsible for making the resource available
Paediatrics and Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Cannabidiol; Cannabis; Drug-resistant epilepsy; Medicinal marijuana; Scoping review; Tetrahydrocannabinoid; Medicinal Cannabis
Creator
An entity primarily responsible for making the resource
Pawliuk C; Chau B; Rassekh SR; McKellar T; Siden H
Description
An account of the resource
INTRODUCTION: The use of medicinal cannabis in the paediatric age group is increasing despite the lack of evidence for its efficacy or safety. OBJECTIVE: To map the available evidence on the efficacy and safety of medicinal cannabis in children and adolescents. METHODS: We conducted a scoping review and searched six electronic databases and grey literature. A study was eligible for inclusion when it investigated the efficacy or safety of medicinal cannabis for any condition, more than half of the participants were 0 to 18 years old, and had any study design except single case reports. RESULTS: We included 36 studies in our final analysis, 32 of which investigated the efficacy or safety of cannabis in treatment-resistant epilepsy. The remaining 4 studies examined patients with cancer, dysautonomia, Epidermolysis Bullosa, and motor disorders. CONCLUSIONS: There is a lack of evidence on the efficacy and safety of medicinal cannabis in most paediatric conditions.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/pch/pxaa031" target="_blank" rel="noreferrer noopener">10.1093/pch/pxaa031</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Cannabidiol
Cannabis
Chau B
Drug-resistant epilepsy
McKellar T
Medicinal Cannabis
Medicinal marijuana
Paediatrics And Child Health
Pawliuk C
Rassekh SR
Scoping review
Siden H
Tetrahydrocannabinoid
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1111/cch.12909" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/cch.12909</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
Medicinal cannabis in children and adolescents with autism spectrum disorder: A scoping review
Publisher
An entity responsible for making the resource available
Child: Care, Health and Development
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Adolescent; anxiety; autism spectrum disorder; Autism Spectrum Disorder; behaviour; Child; Child, Preschool; communication; Humans; hyperactivity; Infant; Infant, Newborn; Medical Marijuana; Parents; Prospective Studies; Retrospective Studies; Medicinal Cannabis
Creator
An entity primarily responsible for making the resource
Fletcher S; Pawliuk C; Ip A; Huh L; Rassekh SR; Oberlander TF; Siden H
Description
An account of the resource
BACKGROUND: Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited, parents are increasingly turning to clinicians for advice regarding the use of medicinal cannabis to manage behavioural disturbances. OBJECTIVE: The objective of this scoping review was to identify and map symptoms, outcomes and adverse events related to medicinal cannabis treatment for ASD-related behaviours. METHODS: Ovid MEDLINE, Embase, CINAHL, PsycInfo, Web of Science Core Collection, Google Scholar and grey literature sources were searched up to 5 January 2020 for studies. Included studies met the following criteria: (1) investigate the use of medicinal cannabis, (2) at least 50% participants had ASD, (3) at least 50% of the study population was 0-18 years old and (4) any study design (published or unpublished). RESULTS: We identified eight completed and five ongoing studies meeting the inclusion criteria. All studies reported substantial behaviour and symptom improvement on medicinal cannabis, with 61% to 93% of subjects showing benefit. In the three studies reporting on concomitant psychotropic medication usage and with cannabis use, up to 80% of participants observed a reduction in concurrent medication use. Adverse events related to cannabis use were reported in up to 27% of participants related, and two participants had psychotic events. CONCLUSIONS: Early reports regarding medicinal cannabis in paediatric ASD symptom management are presented as positive; the evidence, however, is limited to very few retrospective cohort and observational studies. Evidence of safety and efficacy from prospective clinical trials is needed.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/cch.12909" target="_blank" rel="noreferrer noopener">10.1111/cch.12909</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Adolescent
anxiety
Autism spectrum disorder
behaviour
Child
Child, Preschool
Child: Care, Health and Development
Communication
Fletcher S
Huh L
Humans
hyperactivity
Infant
Infant, Newborn
Ip A
Medical Marijuana
Medicinal Cannabis
Oberlander TF
Parents
Pawliuk C
Prospective Studies
Rassekh SR
Retrospective Studies
Siden H
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.11124/JBIES-20-00001" target="_blank" rel="noreferrer noopener"> http://doi.org/10.11124/JBIES-20-00001</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
Symptoms, adverse events, and outcomes in the use of medicinal cannabis in children and adolescents with autism spectrum disorder: a scoping review protocol
Publisher
An entity responsible for making the resource available
JBI Evidence Synthesis
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Adolescent; Autism Spectrum Disorder; Child; Delivery of Health Care; Humans; Medical Marijuana; Parents; Review Literature as Topic; Medicinal Cannabis
Creator
An entity primarily responsible for making the resource
Fletcher S; Pawliuk C; Ip A; Oberlander T; Siden H
Description
An account of the resource
OBJECTIVE: The objective of this scoping review is to map and identify the symptoms, adverse events, and outcomes in the use of medicinal cannabis in children and adolescents with autism spectrum disorder. INTRODUCTION: Autism spectrum disorder is a neurodevelopmental disorder that impacts social communication and social interaction, and is associated with restrictive and repetitive behaviors and interests. Medicinal cannabis has become a potential area of interest for parents for the treatment of autism spectrum disorder symptoms in their children. There is some evidence that cannabinoids may be involved in autism spectrum disorder, laying a potential foundation for medicinal cannabis utility; however, previous reviews did not identify any clinical research on this topic. INCLUSION CRITERIA: This scoping review will consider all published and unpublished studies that investigate the use of medicinal cannabis in autism spectrum disorder, where at least 50% of the participants have a diagnosis of autism spectrum disorder and at least 50% of the study population is 0 to 18 years of age, or where pediatric data are reported separately. Studies undertaken in any context (hospital or community) and in any geographic location will be included. METHODS: We will search MEDLINE, Embase, CINAHL, PsycINFO, Web of Science, and Google Scholar, and the gray literature sources for studies. Two independent team members will screen titles and abstracts, review full texts for potential inclusion, and extract data for all studies. The results will be presented as a narrative synthesis and in tabular form.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.11124/JBIES-20-00001" target="_blank" rel="noreferrer noopener">10.11124/JBIES-20-00001</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Adolescent
Autism spectrum disorder
Child
Delivery of Health Care
Fletcher S
Humans
Ip A
JBI Evidence Synthesis
Medical Marijuana
Medicinal Cannabis
Oberlander T
Parents
Pawliuk C
Review Literature as Topic
Siden H
-
https://d1y502jg6fpugt.cloudfront.net/32554/archive/files/3f4c6308bc3d3f5d06d3ad990d2eef4c.pdf?Expires=1712793600&Signature=F9GIWvIa1fN7tbGTXTu5XukHThQ%7Ef5vDaHoiSF0XEyO6DGJ1JCZIIOvWqupTJgg4cxxBIPRphXwmX488mMY6n3sGEjCILBe7LjPqf9%7ERgm5TVu0v7BY9EevE2nVZ8j5MU21Gg-60HcdtoK8tzHpUOJ1Ojh70G9JWoxulmcP73Q9dG06HHWSdeVjWmXVN7U%7EOELISKzlhr32WfuNymz%7Etxo5cfmxjJ87I1L3X43yqBMa3WIwNxZEYMlJJanqhMxwugy4EGn-TASRFi0JJp8zAjeYMLWLlkGteZQYbnK5qq%7Exfbx8mM2-ihsx35as%7EnPVS2VgQmkiDpIsC6vNrmaoVdg__&Key-Pair-Id=K6UGZS9ZTDSZM
8b44e0f0b438b95b5b793aa7e027474e
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/.
Creator
An entity primarily responsible for making the resource
Ketchum K; Carleton B; Dewan T; Gnanakumar V; Orkin J; Richardson A; Vadeboncoeur C; Oberlander T; Siden H
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Title
A name given to the resource
Pain Detectives: Optimizing the Management of Pain and Irritability of Unknown Origin in Children with Severe Neurological Impairment (Poster)
Rights
Information about rights held in and over the resource
<span>Article information provided for research and reference use. It is licensed under the Creative Commons License: </span><a href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)</a>
Carleton B
Dewan T
Gnanakumar V
Ketchum K
Oberlander T
Orkin J
PIUO
Richardson A
Siden H
Vadeboncoeur C
-
https://d1y502jg6fpugt.cloudfront.net/32554/archive/files/b0b7d0fbb423980126cb1d99f7b93f16.pdf?Expires=1712793600&Signature=c33xKPjb8qIHj5TTIT5fJyidzJ7VPm59hN%7E%7EFWmdTVwwxyzqxefCa3mUPOoS23YyHy1sLtmaKotKt6%7Ej8fKqiG3X24EJj263f7I7RZ89Ku2FqlqJGtGNNkk9Dql-0tHTy0po9AAEwtMhSUXE7gCjnF7ibodUIV3EMhc2f7xrZb%7EKUGON-1rRF1VzdDh0N6ryJL-YECZKWVSjFJHlCLOOUbmqTcA4YK-SbTGtGBH6JVPrbTwENfW8W1TZedUUcdauSThIPwLDRBrk8HzjMWVz1NfIZyEQ4nkmmGtqwx8B772GuBdFygDVIS-HCoJhCXphWl-7WPMUU9PwMB8-nw7gjA__&Key-Pair-Id=K6UGZS9ZTDSZM
c7930e2efc8577267b3255fc7be44620
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
Caregiver-reported nociceptive pain responses in children with significant neurological impairment (Poster)
Creator
An entity primarily responsible for making the resource
Johnston E; Orkin J; Vadeboncoeur C; Gnanakumar V; Dewan T; Richardson A; Holsti L; Carleton B; Oberlander T; Siden H
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Rights
Information about rights held in and over the resource
<span>Article information provided for research and reference use. It is licensed under the Creative Commons License: </span><a href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)</a>
Carleton B
Dewan T
Gnanakumar V
Holsti L
Johnston E
Oberlander T
Orkin J
PIUO
Richardson A
Siden H
Vadeboncoeur C
-
https://d1y502jg6fpugt.cloudfront.net/32554/archive/files/e3528d242794a35f67eb1dbbdc5076ba.pdf?Expires=1712793600&Signature=LAgUKLF0rr6Pj5LRUI7tEE%7EGBzYH5qvU1H7Uh7-hLkxpSviK1anjWpswB75BI1ifkIqS6BMeml%7EiiPKji9RHakqDrUVXBkjeZRf1gZk3liTKkIzk0b1IsyUbOZnk2T5%7EDYMpXFMLgkYj-ImqBCs2Paq7D2m1AsvzCLgvpmGyff-VOoBSygHws44p7E5QsByMoGipsGf-2wGocFKI9-PdHxd6sSb90rIb69Neaqi0xO0K-WbrQdyXxKqLAB%7EPlumWlBdwX%7E-yJPkqfa50FXF8gkA1ON%7EtXamuJhb5Btlh%7EJIEcSdv32FTZZkNJswUyuR2bHqeZgpAuwfUhGirBu4i8g__&Key-Pair-Id=K6UGZS9ZTDSZM
48095c6fd1589460fbb7b22710dd8d6e
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
The PIUO Study: Optimizing the Management of Pain and Irritability of Unknown Origin in Children with Severe Neurological Impairment (Poster)
Creator
An entity primarily responsible for making the resource
Siden H; Hermansen AM
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Rights
Information about rights held in and over the resource
<span>Article information provided for research and reference use. It is licensed under the Creative Commons License: </span><a href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)</a>
Hermansen AM
Pain
PIUO
Siden H
-
https://d1y502jg6fpugt.cloudfront.net/32554/archive/files/62591765c20d70ce5d0869a104bd8901.pdf?Expires=1712793600&Signature=kWGmtx4ZKNCQqQiI18LNQk1eBm6rn5m7t2MyipLbr7C18PA%7EH3OjCYSbE1JgFJd749sRrmr76x%7EVlV41e50pa9AIQZObOWHe3LwPieu%7E1Ere0iCqTdms7qNJS5Gcb53f40Ii-daQt6GkkoxLE-YteFZ9hwB7ftjUw5uzcC2IhAiRdZQcy-eDf7FQyxhiLd037LNNFvNmhOO%7Emb%7E9pvVFHY6jWIhRfs0VR2DvWSkgofaNa64bE2OeCQAZ8Zt3V-IHgy4qjzv9PEKqin3IdP91YRtlg9PS%7EcrbK1d9sy-bP0mmFTHjvD46%7E5e7cf5PRtg79MbA8hgmomiRzWHfFEnhSw__&Key-Pair-Id=K6UGZS9ZTDSZM
6664acdd4a7a3750bdab4162c4338a10
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
The Family Liaison : an integral part of our research team (Poster)
Creator
An entity primarily responsible for making the resource
Hermansen AM; Kim L; Siden H
Identifier
An unambiguous reference to the resource within a given context
<a href="http://hdl.handle.net/2429/78621">10.14288/1.0398351</a>
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Description
An account of the resource
In caring for children with serious illness the clinician’s approach is always family centred. As such our clinical research team has continuously involved families in our studies beyond their role as participants in our research. A Family Advisory Group reviews our project proposals and protocols and participating families provide feedback on their experience after graduating from one of our studies. However, in learning about patient-oriented research strategies through our engagement with the CHILD-BRIGHT network, we have come to realize that in order to fully partner with families, specifically parents of children participating in our research, we need to have an embedded team member who acts as a parent-partner in all our endeavours. Therefore we have created the role of Family Liaison as a fixed part of our team makeup and hired Laesa Kim to fill this position. Laesa’s job goes beyond that of advisor for two important reasons: She holds a paid position within our staff group and her contribution to our program supersedes that which can be expected of volunteer committee members. The Family Liaison is a bridge between researchers and participants, not just in the connections she makes when translating the research objectives and protocols to participants, but also in bringing a parent or patient perspective to every stage of study design and roll out. Along with Laesa’s specific job description comes expectations of rather unique credentials to successfully fill the role. Laesa shares in the lived experience of our participants as the mother of a medically complex child, with years of learning to understand and navigate health care systems. Her experience coupled with a disposition for connecting with health care providers as well as fellow parents of children needing health care while understanding and advocating for the specific needs of this population, positions her perfectly to fill this role. We will describe the value of the Family Liaison within our team as an integral part of our research program while showing the power of investing in patient-oriented research strategies to advance our projects.
Rights
Information about rights held in and over the resource
<span>Article information provided for research and reference use. It is licensed under the Creative Commons License: </span><a href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)</a>
2021
Family Liaison
Hermansen AM
Kim L
Parent Participation
Siden H
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
June 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2022 List
URL Address
<a href="http://doi.org/10.12927/hcq.2022.26778" target="_blank" rel="noreferrer noopener">http://doi.org/10.12927/hcq.2022.26778</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Ensuring Equity and Inclusion in Virtual Care Best Practices for Diverse Populations of Youth with Chronic Pain
Publisher
An entity responsible for making the resource available
Healthcare Quarterly (Toronto, Ontario)
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Adolescent; Canada; Chronic Pain; COVID-19; Humans; Pandemics
Creator
An entity primarily responsible for making the resource
Birnie KA; Killackey T; Backlin G; Gavin F; Harris C; Jordan I; Kim L;Marianayagam J; Swidrovich J; Lalonde C; Tunji-Ajayi L; Oberlander T; Kirby-Allen M; Lambert S; Siden H; Swidrovich J; Noel M; Lalloo C; Stinson J
Description
An account of the resource
Poor access to care is a top patient-oriented research priority for youth with chronic pain in Canada, and the COVID-19 pandemic has exacerbated these concerns. Our patient-oriented project team engaged with marginalized and racialized youth with chronic pain (Black youth with sickle cell disease, Indigenous youth and youth with complex medical needs) and their families to ensure that best practice recommendations for virtual care are inclusive and equitable. Input provided through virtual round-table discussions improved recommendations for leveraging, implementing and selecting best platforms for virtual care for youth with chronic pain and identified new gaps for future research, practice and policy change.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12927/hcq.2022.26778" target="_blank" rel="noreferrer noopener">10.12927/hcq.2022.26778</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Adolescent
April 2022 List
Backlin G
Birnie KA
Canada
Chronic Pain
COVID-19
Gavin F
Harris C
Healthcare Quarterly (Toronto, Ontario)
Humans
Jordan I
Killackey T
Kim L
Kirby-Allen M
Lalloo C
Lalonde C
Lambert S
Marianayagam J
Noel M
Oberlander T
Pandemics
Siden H
Stinson J
Swidrovich J
Tunji-Ajayi L
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Special Edition #1 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1002/jgc4.1353" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/jgc4.1353</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
Rapid genome-wide sequencing in a neonatal intensive care unit: A retrospective qualitative exploration of parental experiences
Publisher
An entity responsible for making the resource available
Journal of Genetic Counseling
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
genetic counseling; lived experience; neonates; Decisional regret; genome-wide sequencing
Creator
An entity primarily responsible for making the resource
Aldridge CE; Osiovich H; Siden H; Elliott AM
Description
An account of the resource
Abstract Genome-wide sequencing (GWS) is increasingly being used in neonatal intensive care units. While studies have explored its clinical utility, little is known about parental experiences with this testing post-return of results. We conducted a qualitative study, using an interpretive description framework and thematic analysis, to gain further insight into parents’ perceptions of the value and utility of GWS for their infant. We sought to explore whether parents’ perceptions differ if their child received a diagnosis or not, and whether their child is living or deceased. Semi-structured, telephone interviews were conducted with parents of infants who had rapid exome sequencing while in the neonatal intensive care unit at BC Women's Hospital in Vancouver, Canada. Interviews addressed perceived benefits and harms of GWS and included an evaluation of decisional regret. Parents of 27 probands were approached and 14 (52%; 13 mothers and 1 father) participated in interviews. On average, 26 months had elapsed from the time of results to the interview. Six themes were identified. Firstly, parents had a positive regard for GWS. The results of GWS helped provide context for their child's admission to the NICU, and all parents experienced relief following receiving the results. A diagnosis by GWS enabled parents to picture the future, form connections with other parents, and coordinate their child's care. Lastly, some parents experienced discomfort with the concept of a genetic diagnosis, and interestingly felt lack of a genomic diagnosis indicated a reduced severity of their infant's condition. Decisional regret post-results was found to be low. Our results highlight how parents cope with the results of GWS and suggest that a genetic counselor can have an important role in helping families understand and adjust to these results in the neonatal intensive care unit.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/jgc4.1353" target="_blank" rel="noreferrer noopener">10.1002/jgc4.1353</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).
2020
2022 Special Edition 1 - Parent Perspectives
Aldridge CE
Decisional regret
Elliott AM
Genetic Counseling
genome-wide sequencing
Journal of Genetic Counseling
lived experience
Neonates
Osiovich H
Siden H
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2022 List
URL Address
<a href="http://doi.org/10.1007/s12152-022-09478-y" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s12152-022-09478-y</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
Neither the “Devil’s Lettuce” nor a “Miracle Cure:” The Use of Medical Cannabis in the Care of Children and Youth
Publisher
An entity responsible for making the resource available
Neuroethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Ethics; Medical cannabis; Pediatrics; Regulation; Strength-based research; Virtual workshop
Creator
An entity primarily responsible for making the resource
Gunning M; Rotenberg A; Anderson J; Balneaves LG; Brace T; Crooks B; Hall W; Kelly LE; Rassekh SR; Rieder M; Virani A; Ware MA; Zaslawski Z; Siden H; Illes J
Description
An account of the resource
Lack of guidance and regulation for authorizing medical cannabis for conditions involving the health and neurodevelopment of children is ethically problematic as it promulgates access inequities, risk-benefit inconsistencies, and inadequate consent mechanisms. In two virtual sessions using participatory action research and consensus-building methods, we obtained perspectives of stakeholders on ethics and medical cannabis for children and youth. The sessions focused on the scientific and regulatory landscape of medical cannabis, surrogate decision-making and assent, and the social and political culture of medical cannabis. We found that evidence-gathering and data dissemination, pressures on clinical relationships, and the lack of integration of culturally diverse perspectives and Indigenous knowledges were key areas of concern. Participants emphasized the importance of utilizing adaptive study designs, highlighted the importance of trust-building between clinicians, patients and caregivers, and discussed barriers including historical and ongoing stigmatization of medical cannabis. We conclude that continued public consultation and strength-based research that integrate diverse perspectives are critical steps forward.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s12152-022-09478-y" target="_blank" rel="noreferrer noopener">10.1007/s12152-022-09478-y</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Anderson J
Balneaves LG
Brace T
Crooks B
Ethics
Gunning M
Hall W
Illes J
Kelly LE
March 2022 List
medical cannabis
Medicinal Cannabis
Neuroethics
Pediatrics
Rassekh SR
regulation
Rieder M
Rotenberg A
Siden H
Strength-based research
Virani A
Virtual workshop
Ware MA
Zaslawski Z
-
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
December 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2021 List
URL Address
<a href="http://doi.org/10.1002/cnr2.1551" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/cnr2.1551</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
Perspectives of pediatric oncologists and palliative care physicians on the therapeutic use of cannabis in children with cancer
Publisher
An entity responsible for making the resource available
Cancer Reports
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
pediatrics; cancer; symptom control; cannabidiol; cannabis; tetrahydrocannabinol
Creator
An entity primarily responsible for making the resource
Oberoi S; Protudjer JLP; Rapoport A; Rassekh SR; Crooks B; Siden H; Decker K; Ananth P; Chapman S; Balneaves LG; Vanan MI; Kelly LE
Description
An account of the resource
Background Children with cancer are increasingly using cannabis therapeutically. Aim The purpose of this study was to determine the perspectives and practices of pediatric oncologists and palliative care physicians regarding the use of cannabis for medical purposes among children with cancer. Methods A self-administered, voluntary, cross-sectional, deidentified online survey was sent to all pediatric oncologists and palliative care physicians in Canada between June and August 2020. Survey domains included education, knowledge, and concerns about cannabis, views on its effectiveness, and the importance of cannabis-related research. Data were analyzed using descriptive statistics. Results In total, 122/259 (47.1%) physicians completed the survey. Although 62.2% of the physicians completed some form of training about medical cannabis, nearly all (95.8%) desired to know more about the dosing, side effects, and safety of cannabis. Physicians identified a potential role of cannabis in the management of nausea and vomiting (85.7%), chronic pain (72.3%), cachexia/poor appetite (67.2%), and anxiety or depression (42.9%). Only four (0.3%) physicians recognized cannabis to be potentially useful as an anticancer agent. Nearly all physicians reported that cannabis-related research for symptom relief is essential (91.5%) in pediatric oncology, whereas 51.7% expressed that future studies are necessary to determine the anticancer effects of cannabis. Conclusions Our findings indicate that most pediatric oncologists and palliative care physicians recognize a potential role for cannabis in symptom control in children with cancer. Well-conducted studies are required to create evidence for cannabis use and promote shared decision making with pediatric oncology patients and their caregivers.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/cnr2.1551" target="_blank" rel="noreferrer noopener">10.1002/cnr2.1551</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Ananth P
Balneaves LG
Cancer
Cancer Reports
Cannabidiol
Cannabis
Chapman S
Crooks B
December 2021 List
Decker K
Kelly LE
Medicinal Cannabis
Oberoi S
Pediatrics
Protudjer JLP
Rapoport A
Rassekh SR
Siden H
Symptom Control
tetrahydrocannabinol
Vanan MI
-
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
December 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2021 List
URL Address
<a href="http://doi.org/10.1503/cmaj.202169" target="_blank" rel="noreferrer noopener">http://doi.org/10.1503/cmaj.202169</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
Improving the regulation of medical cannabis in Canada to better serve pediatric patients
Publisher
An entity responsible for making the resource available
CMAJ
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Canada; Cannabis; Drug regulation; Health policy; Pediatrics
Creator
An entity primarily responsible for making the resource
Huntsman RJ; Kelly LE; Alcorn J; Appendino JP; Bélanger RE; Crooks B; Finkelstein Y; Gilpin A; Lewis E; Litalien C; Jacobs J; Moore-Hepburn C; Oberlander T; Rassekh SR; Repetski AE; Rieder MJ; Shackelford A; Siden H; Szafron M; ‘t Jong GW; Vaillancourt R
Description
An account of the resource
Key points Children with chronic debilitating illness and pain are increasingly using cannabis for medical purposes, particularly when conventional treatment options have limited benefit or substantial adverse effects. Caregivers are becoming aware of evidence that suggests medical cannabis provides
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1503/cmaj.202169" target="_blank" rel="noreferrer noopener">10.1503/cmaj.202169</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).
‘t Jong GW
2021
Alcorn J
Appendino JP
Bélanger RE
Canada
Cannabis
CMAJ
Crooks B
December 2021 List
Drug regulation
Finkelstein Y
Gilpin A
Health Policy
Huntsman RJ
Jacobs J
Kelly LE
Lewis E
Litalien C
Moore-Hepburn C
Oberlander T
Pediatrics
Rassekh SR
Repetski AE
Rieder MJ
Shackelford A
Siden H
Szafron M
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
October 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2021 List
URL Address
<a href="http://doi.org/10.1111/cch.12909" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/cch.12909</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
Medicinal cannabis in children and adolescents with autism spectrum disorder: A scoping review
Publisher
An entity responsible for making the resource available
Child
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
adolescent; cannabis; children; anxiety; autism spectrum disorder; behaviour; communication; hyperactivity
Creator
An entity primarily responsible for making the resource
Fletcher S; Pawliuk C; Ip A; Huh L; Rassekh SR; Oberlander TF; Siden H
Description
An account of the resource
Background Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited, parents are increasingly turning to clinicians for advice regarding the use of medicinal cannabis to manage behavioural disturbances. Objective The objective of this scoping review was to identify and map symptoms, outcomes and adverse events related to medicinal cannabis treatment for ASD-related behaviours. Methods Ovid MEDLINE, Embase, CINAHL, PsycInfo, Web of Science Core Collection, Google Scholar and grey literature sources were searched up to 5 January 2020 for studies. Included studies met the following criteria: (1) investigate the use of medicinal cannabis, (2) at least 50% participants had ASD, (3) at least 50% of the study population was 0–18 years old and (4) any study design (published or unpublished). Results We identified eight completed and five ongoing studies meeting the inclusion criteria. All studies reported substantial behaviour and symptom improvement on medicinal cannabis, with 61% to 93% of subjects showing benefit. In the three studies reporting on concomitant psychotropic medication usage and with cannabis use, up to 80% of participants observed a reduction in concurrent medication use. Adverse events related to cannabis use were reported in up to 27% of participants related, and two participants had psychotic events. Conclusions Early reports regarding medicinal cannabis in paediatric ASD symptom management are presented as positive; the evidence, however, is limited to very few retrospective cohort and observational studies. Evidence of safety and efficacy from prospective clinical trials is needed.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/cch.12909" target="_blank" rel="noreferrer noopener">10.1111/cch.12909</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Adolescent
anxiety
Autism spectrum disorder
behaviour
Cannabis
Child
Children
Communication
Fletcher S
Huh L
hyperactivity
Ip A
Oberlander TF
October 2021 List
Pawliuk C
Rassekh SR
Siden H
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
September 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.07.026" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.07.026</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
The Parental Experience of Caring for A Child with Pain and Irritability of Unknown Origin
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
pediatrics; pain; severe neurological impairment; irritability; qualitative inquiry
Creator
An entity primarily responsible for making the resource
Rizakos S; Parmar A; Siden H; Orkin J
Description
An account of the resource
Background and Objective : Approximately 73% of children with severe neurological impairment (SNI) can experience episodes of pain and irritability often of unknown origin (PIUO). Limited research exists on how these experiences of PIUO may affect parental caregivers and families. The primary objective of this study was to understand the parental caregiver experience of caring for a child with SNI who experiences persistent PIUO. Methods : We conducted a qualitative study using semi-structured interviews to explore the experience of parental caregivers of children with SNI. Interview guide questions focused on exploring pain behaviours, the diagnostic process, pharmacological and non-pharmacological management, healthcare-team support, discussion surrounding irritability, and family impact. Interviews were conducted until thematic saturation was reached. Interviews were audio-recorded, transcribed verbatim, and coded and analyzed by two independent reviewers using thematic analysis. Results : Fifteen parental caregivers were interviewed, with 93% being mothers and 33% being a visible minority. Interviews revealed three major themes: 1) Variations in Clinical Care for PIUO; 2) The Experience and Challenges of Living with PIUO); 3) Managing the Impact of PIUO on Parental Well Being. Interviews demonstrated that parent and child can be viewed as a dyad, in which the child's experience is inherently linked to the parental experience. Conclusion : Parental caregivers described caring for a child with persistent PIUO as physically and emotionally exhausting, and negatively impacting family quality of life. Interviews highlighted avenues of future exploration for clinical care, including both enhanced management pathways for children and supportive resources for education and coping for parents.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2021.07.026" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.07.026</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Irritability
Journal of Pain and Symptom Management
Orkin J
Pain
Parmar A
Pediatrics
PIUO
Qualitative Inquiry
Rizakos S
September 2021 List
severe neurological impairment
Siden H
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
July 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2021 List
URL Address
<a href="http://doi.org/10.9778/cmajo.20200212" target="_blank" rel="noreferrer noopener">http://doi.org/10.9778/cmajo.20200212</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
Family attitudes about and experiences with medical cannabis in children with cancer or epilepsy: an exploratory qualitative 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
2021
Subject
The topic of the resource
Epilepsy; Family Attitudes; medical cannabis; oncology; pain management; parent experiences; pediatric palliative care
Creator
An entity primarily responsible for making the resource
Gibbard M; Mount D; Rassekh SR; Siden H
Description
An account of the resource
BACKGROUND: Cannabis is legal for recreational and medical use in Canada. Our aim was to explore family experiences using medical cannabis for children with severe conditions in the context of legalization. METHODS: We conducted a qualitative study using semistructured interviews between April and July 2019. Participants were parents of children attending BC Children's Hospital oncology or palliative care clinics, recruited through posters, emails or referral. Participants were included if they spoke English and their child used any type of cannabis for medical purposes. Interviews included open-ended questions about the child's cannabis use. Interviews were recorded and transcribed, and thematic analysis was performed using qualitative description. RESULTS: Ten interviews were completed with 9 mothers and 1 mother-father pair. The age range of the children was 22 months to 16 years. The primary reasons for cannabis use were epilepsy (6 children) or chemotherapy management (4 children). Five major themes were identified. 1) Child and family context, and cannabis as a last resort: children were seen as severely ill; parents sought cannabis out of desperation and responsibility to their child. 2) Varied information sources informed decision-making: parents lacked resources from health care providers and sought support from social media, industry and other families. 3) Cannabis as an ambiguous medicine: cannabis was viewed as both a serious drug that doctors should prescribe and as a natural alternative health product, safe to pursue alone. 4) Perceived effects: parents perceived medical benefits with few concerns about adverse effects. 5) Legal and financial challenges: parents were willing to obtain cannabis despite high costs and uncertain legality. INTERPRETATION: Parents of children with severe conditions pursued medical cannabis despite obstacles and needed unbiased information to access alone. Scientific investigation is needed to develop pediatric medical guidelines to inform decisions.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.9778/cmajo.20200212" target="_blank" rel="noreferrer noopener">10.9778/cmajo.20200212</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Cmaj Open
Epilepsy
Family Attitudes
Gibbard M
July 2021 List
medical cannabis
Medicinal Cannabis
Mount D
Oncology
Pain Management
Parent Experiences
Pediatric Palliative Care
Rassekh SR
Siden H
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
December 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2020 List
URL Address
<a href="http://doi.org/10.1002/jgc4.1353" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/jgc4.1353</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
Rapid genome-wide sequencing in a neonatal intensive care unit: A retrospective qualitative exploration of parental experiences
Publisher
An entity responsible for making the resource available
Journal of Genetic Counseling
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Decisional regret; genetic counseling; genome-wide sequencing; lived experience; neonates
Creator
An entity primarily responsible for making the resource
Aldridge CE; Osiovich H; Siden H; Elliott AM
Description
An account of the resource
Abstract Genome-wide sequencing (GWS) is increasingly being used in neonatal intensive care units. While studies have explored its clinical utility, little is known about parental experiences with this testing post-return of results. We conducted a qualitative study, using an interpretive description framework and thematic analysis, to gain further insight into parents’ perceptions of the value and utility of GWS for their infant. We sought to explore whether parents’ perceptions differ if their child received a diagnosis or not, and whether their child is living or deceased. Semi-structured, telephone interviews were conducted with parents of infants who had rapid exome sequencing while in the neonatal intensive care unit at BC Women's Hospital in Vancouver, Canada. Interviews addressed perceived benefits and harms of GWS and included an evaluation of decisional regret. Parents of 27 probands were approached and 14 (52%; 13 mothers and 1 father) participated in interviews. On average, 26 months had elapsed from the time of results to the interview. Six themes were identified. Firstly, parents had a positive regard for GWS. The results of GWS helped provide context for their child's admission to the NICU, and all parents experienced relief following receiving the results. A diagnosis by GWS enabled parents to picture the future, form connections with other parents, and coordinate their child's care. Lastly, some parents experienced discomfort with the concept of a genetic diagnosis, and interestingly felt lack of a genomic diagnosis indicated a reduced severity of their infant's condition. Decisional regret post-results was found to be low. Our results highlight how parents cope with the results of GWS and suggest that a genetic counselor can have an important role in helping families understand and adjust to these results in the neonatal intensive care unit.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/jgc4.1353" target="_blank" rel="noreferrer noopener">10.1002/jgc4.1353</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).
2020
Aldridge CE
December 2020 List
Decisional regret
Elliott AM
Genetic Counseling
genome-wide sequencing
Journal of Genetic Counseling
lived experience
Neonates
Osiovich H
Siden H
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
May 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2019 List
URL Address
<a href="http://doi.org/10.1111/dmcn.14180" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.14180</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
A novel classification system for research reporting in rare and progressive genetic conditions
Publisher
An entity responsible for making the resource available
Developmental Medicine & Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Creator
An entity primarily responsible for making the resource
van Karnebeek CDM; Beumer D; Pawliuk C; Goez Helly; Mostafavi S; Andrews G; Steele R; Siden H
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/dmcn.14180" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14180</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).
Description
An account of the resource
Aim To create a classification system for severe, rare, and progressive genetic conditions for use in research reporting. Method A modified Delphi consensus technique was used to create and reach agreement on a new system of condition categories. Interrater reliability was tested via two rounds of an online survey whereby physicians classified a subset of conditions using our novel system. Overall percentage agreement and agreement above chance were calculated using Fleiss’ kappa (κ). Results Eleven physicians completed the first Delphi, with an overall agreement of 76.4%, the κ value was 0.57 (95% confidence interval 0.51–0.63), indicating moderate agreement (0.41–0.60) above chance. Based on the first survey several categories were described in more detail. The second survey confirmed a classification system with 12 categories, with an overall percentage agreement among the participants of 82.6%. The overall mean κ value was 0.71 (95% confidence interval 0.65–0.77), indicating substantial agreement (0.61–0.80). Interpretation Our new system was useful in categorizing a broad range of rare childhood diseases and may be applicable to other rare disease studies; further validation in larger cohorts is required. What this paper adds This novel 12-category classification system can be used in research reporting in rare and progressive genetic conditions.
2019
Andrews G
Beumer D
Charting the territory
Developmental Medicine & Child Neurology
Goez Helly
May 2019 List
Mostafavi S
Pawliuk C
Siden H
Steele R
van Karnebeek CDM
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
February 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.042" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.042</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Exploring Resident Physicians' Experiences Practicing in Pediatric Palliative Care: A Hermeneutic Method of Inquiry
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
death; grief; semi structured interview; pediatrics; palliative therapy; student; personal experience; resident; medical education; data analysis; genetic transcription; conference abstract; human; child; controlled study; perception; guilt; qualitative research; phenomenology; chronic patient; rotation
Creator
An entity primarily responsible for making the resource
Johnson A; Siden H; Charles G
Description
An account of the resource
Objectives: The experiences of medical residents during training in pediatric palliative care has recently become an area of focus within medical education literature. Residents' medical knowledge, skill development, and comfort in clinical practice in palliative care have all been investigated within recent studies. However, the current body of literature in this area is limited and under-developed as it has neglected the human experience of caring for children with life-limiting diseases. The primary objective of this study is to widen the understanding of pediatric residents who have completed training in pediatric palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.042" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.042</a>
2018
Charles G
Child
Chronic Patient
conference abstract
Controlled Study
Data Analysis
Death
February 2019 List
genetic transcription
Grief
Guilt
Human
Johnson A
Journal of Pain and Symptom Management
Medical Education
Palliative Therapy
Pediatrics
Perception
Personal Experience
Phenomenology
Qualitative Research
Resident
Rotation
Semi Structured Interview
Siden H
Student
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
November 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2017.0532</a>
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
National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on Pediatric Palliative Care
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
2018
Subject
The topic of the resource
cancer palliative therapy;childhood cancer;medical education;Pediatrics;Advance care planning;article;Canada;Child;clinical practice;health care quality;health practitioner;Human;professional knowledge;quality of life;self care;tertiary care center;total quality management
Creator
An entity primarily responsible for making the resource
Widger K;Wolfe J;Friedrichsdorf S;Pole JD;Brennenstuhl S;Liben S;Greenberg M;Bouffet E;Siden H;Husain A;Whitlock JA;Leyden M;Rapoport A
Description
An account of the resource
Abstract Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC?-Pediatrics) curriculum on the following: (1) knowledge dissemination; (2) health professionals' knowledge; (3) practice change; and (4) quality of PPC. Design: An integrated knowledge translation approach was used with pre-/posttest evaluation of care quality. Setting/Subjects/Measurements: Regional Teams of 3?6 health professionals based at 15 pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who taught the curriculum to health professionals (learners) and implemented quality improvement (QI) projects. Trainers recorded the number of learners at each education session and progress on QI goals. Learners completed knowledge surveys. Care quality was assessed through surveys with a cross-sectional sample of children with cancer and their parents about symptoms, quality of life, and care quality plus reviews of deceased patients' health records. Results: Seventy-two Trainers taught 3475 learners; the majority (96.7%) agreed that their PPC knowledge improved. In addition, 10/15 sites achieved practice change QI goals. The only improvements in care quality were an increased number of days from referral to PPC teams until death by a factor of 1.54 (95% confidence interval [CI]?=?1.17?2.03) and from first documentation of advance care planning until death by a factor of 1.50 (95% CI?=?1.06?2.11), after adjusting for background variables. Conclusion: While improvements in care quality were only seen in two areas, our approach was highly effective in achieving knowledge dissemination, knowledge improvement, and practice change goals.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0532</a>
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).
2018
Advance Care Planning
Article
Bouffet E
Brennenstuhl S
Canada
Cancer Palliative Therapy
Child
Childhood Cancer
Clinical Practice
Friedrichsdorf S
Greenberg M
Health Care Quality
health practitioner
Human
Husain A
Journal of Palliative Medicine
Leyden M
Liben S
Medical Education
November 2018 List
Pediatrics
Pole JD
professional knowledge
Quality Of Life
Rapoport A
Self Care
Siden H
tertiary care center
Total Quality Management
Whitlock JA
Widger K
Wolfe J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
September 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2017.0532</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on Pediatric Palliative Care
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
2018
Creator
An entity primarily responsible for making the resource
Widger K; Wolfe J; Friedrichsdorf S; Pole JD; Brennenstuhl S; Liben S; Greenberg M; Bouffet E; Siden H; Husain A; Whitlock JA; Leyden M; Rapoport A
Description
An account of the resource
Abstract Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC?-Pediatrics) curriculum on the following: (1) knowledge dissemination; (2) health professionals' knowledge; (3) practice change; and (4) quality of PPC. Design: An integrated knowledge translation approach was used with pre-/posttest evaluation of care quality. Setting/Subjects/Measurements: Regional Teams of 3?6 health professionals based at 15 pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who taught the curriculum to health professionals (learners) and implemented quality improvement (QI) projects. Trainers recorded the number of learners at each education session and progress on QI goals. Learners completed knowledge surveys. Care quality was assessed through surveys with a cross-sectional sample of children with cancer and their parents about symptoms, quality of life, and care quality plus reviews of deceased patients' health records. Results: Seventy-two Trainers taught 3475 learners; the majority (96.7%) agreed that their PPC knowledge improved. In addition, 10/15 sites achieved practice change QI goals. The only improvements in care quality were an increased number of days from referral to PPC teams until death by a factor of 1.54 (95% confidence interval [CI]?=?1.17?2.03) and from first documentation of advance care planning until death by a factor of 1.50 (95% CI?=?1.06?2.11), after adjusting for background variables. Conclusion: While improvements in care quality were only seen in two areas, our approach was highly effective in achieving knowledge dissemination, knowledge improvement, and practice change goals.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0532</a>
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.
2018
Bouffet E
Brennenstuhl S
Friedrichsdorf S
Greenberg M
Husain A
Journal of Palliative Medicine
Leyden M
Liben S
October 2018 List
Pole JD
Rapoport A
September 2018 List
Siden H
Whitlock JA
Widger K
Wolfe J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1089/jpm.2013.0529" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2013.0529</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
caregivers; research participation
Creator
An entity primarily responsible for making the resource
Steele R; Cadell S; Siden H; Andrews GS; Smit Quosai T; Feichtinger L
Description
An account of the resource
Abstract 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.
2014-07
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).
Type
The nature or genre of the resource
Journal Article
2014
Andrews GS
Backlog
Cadell S
Caregivers
Feichtinger L
Journal Article
Journal of Palliative Medicine
research participation
Siden H
Smit Quosai T
Steele R
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/1043454214555197" target="_blank" rel="noreferrer">http://doi.org/10.1177/1043454214555197</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
An entity responsible for making the resource available
Journal Of Pediatric Oncology Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
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 κ were used to evaluate the level of association between the scales. The association between RPS and the FPS-R was greater than .7 at all 3 visits; r = .96 between the scales at the first clinic visit, .97 at the second visit, and .93 at the third visit. Cohen's κ between scales was 1.0 at the first clinic visit, .95 at the second visit, and .87 at the third visit. The RPS shows excellent concurrent validity with the FPS-R in school-aged children. The next step will be to examine the psychometric properties of the RPS in preschool-aged children.
2014-11
Identifier
An unambiguous reference to the resource within a given context
<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).
Type
The nature or genre of the resource
Journal Article
2014
Backlog
Giaschi D
Holsti L
Journal Article
Journal Of Pediatric Oncology Nursing
Mahon P
Siden H
Strahlendorf C
Turnham L
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/1049909114524476" target="_blank" rel="noreferrer">http://doi.org/10.1177/1049909114524476</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
hospice; mortality; illness; life-threatening conditions
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.
2014-03
Identifier
An unambiguous reference to the resource within a given context
<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).
Type
The nature or genre of the resource
Journal Article
2014
Backlog
Chavoshi N
Hospice
Illness
Journal Article
Life-threatening Conditions
Miller T
Mortality
Siden H
The American Journal of Hospice & Palliative Care
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1136/archdischild-2013-305246" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2013-305246</a>
<a href="http://adc.bmj.com/content/99/8/754.abstract" target="_blank" rel="noreferrer noopener">http://adc.bmj.com/content/99/8/754.abstract</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: symptoms and functional assessment in children with progressive, non-curable conditions
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
PEDI Study; Metabolic; Neurodisability; Genetics
Creator
An entity primarily responsible for making the resource
Steele R; Siden H; Cadell S; Davies B; Andrews GS; Feichtinger L; Singh M
Description
An account of the resource
Background Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis, yet, little is known about their patterns of symptoms and functional abilities.Aim To describe these children's symptoms, as well as how the children's condition affects them physically.Design Cross-sectional, baseline results from an observational, longitudinal study, Charting the Territory, that followed 275 children and their families.Setting/participants Seven tertiary care children's hospitals in Canada, 2 in the USA. Families were eligible based on the child's condition. A total of 275 children from 258 families participated.Results The 3 most common symptoms in these children were pain, sleep problems, and feeding difficulties; on average, they had 3.2 symptoms of concern. There was a pattern of under-reporting of children's symptoms for clinicians compared with parents. Regardless of use of associated medications, pain, feeding and constipation symptoms were often frequent and distressing. Children with a G/J tube had a higher total number of symptoms, and respiratory problems, pain, feeding difficulties and constipation were more likely to occur. They also tended to have frequent and distressing symptoms, and to need extensive mobility modifications which, in turn, were associated with higher numbers of symptoms.Conclusions These children experience multiple symptoms that have been previously documented individually, but not collectively. Effective interventions are needed to reduce their symptom burden. Future longitudinal analyses will examine which disease-modifying interventions improve, or do not improve, symptom burden.
2014-08
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2013-305246" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2013-305246</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2014
Andrews GS
Archives of Disease in Childhood
Backlog
Cadell S
Charting the territory
Davies B
Feichtinger L
Genetics
Journal Article
Metabolic
Neurodisability
PEDI Study
Siden H
Singh M
Steele R
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1155/2013/193937" target="_blank" rel="noreferrer">http://doi.org/10.1155/2013/193937</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
Physician variability in treating pain and irritability of unknown origin in children with severe neurological impairment
Publisher
An entity responsible for making the resource available
Pain Research & Management : The Journal Of The Canadian Pain Society = Journal De La Societe Canadienne Pour Le Traitement De La Douleur
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Article #6
Creator
An entity primarily responsible for making the resource
Siden H; Carleton BC; Oberlander T
Description
An account of the resource
BACKGROUND: <⁄span> 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: <⁄span> 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: <⁄span> 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: <⁄span> 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: <⁄span> 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.
2013-10
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1155/2013/193937" target="_blank" rel="noreferrer">10.1155/2013/193937</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2013
Article #6
Backlog
Carleton BC
Journal Article
Oberlander T
Pain Research & Management : The Journal Of The Canadian Pain Society = Journal De La Societe Canadienne Pour Le Traitement De La Douleur
Siden H
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1155/2013/286751" target="_blank" rel="noreferrer">http://doi.org/10.1155/2013/286751</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
Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care
Publisher
An entity responsible for making the resource available
Nursing Research And Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Creator
An entity primarily responsible for making the resource
Cook KA; Siden H; Jack S; Thabane L; Browne G
Description
An account of the resource
Advances in pediatric care have not provided the interdisciplinary support services required by those young adults with pediatric life-threatening conditions (pedLTCs) who live beyond childhood but have limited expectations to live past early adulthood. These young adults, the first generation to live into adulthood, face multiple challenges transitioning from a plethora of pediatric palliative services to scant adult health services. In a case study, using an innovative bulletin board focus group, we describe the complex interplay of the health, education, and social service sectors in this transition. Our descriptions include system deficits and strengths and the young adults' resilience and coping strategies to overcome those deficits and move forward with their lives. Young adults with pedLTC need knowledgeable providers, coordinated and accessible services, being respected and valued, and services and supports that promote independence. We recommend implementation of multidisciplinary solutions that are focused on young adult priorities to ensure seamless access to resources to support these young adults' health, educational, vocational, and social goals. The input and voice of young adults in the development of these services are imperative to ensure that multisystem services support their needs and life goals.
2013
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1155/2013/286751" target="_blank" rel="noreferrer">10.1155/2013/286751</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2013
Backlog
Browne G
Cook KA
Jack S
Journal Article
Nursing Research And Practice
Siden H
Thabane 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
Backlog
URL Address
<a href="http://doi.org/10.1093/jpepsy/jsw053" target="_blank" rel="noreferrer">http://doi.org/10.1093/jpepsy/jsw053</a>
<a href="http://www.ncbi.nlm.nih.gov/pubmed/27342306" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/pubmed/27342306</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Siblings of Children With a Complex Chronic Health Condition: Maternal Posttraumatic Growth as a Predictor of Changes in Child Behavior Problems
Publisher
An entity responsible for making the resource available
Journal of Pediatric Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
Stephenson E; DeLongis A; Steele R; Cadell S; Andrews GS; Siden H
Description
An account of the resource
OBJECTIVE: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. METHODS: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports. At each visit, mothers also completed self-reports of posttraumatic growth. RESULTS: Time-lagged multilevel regression analyses revealed that higher levels of maternal posttraumatic growth predicted subsequent declines in parent-reported internalizing, externalizing, and total behavior problems among healthy siblings. These findings were partially replicated using youth self-reports of their own behavior problems. CONCLUSION: The findings suggest that the benefits of posttraumatic growth may extend beyond the self to other family members, particularly to children in the family.
2016-06
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/jpepsy/jsw053" target="_blank" rel="noreferrer">10.1093/jpepsy/jsw053</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2016
Andrews GS
Backlog
Cadell S
DeLongis A
Journal Article
Journal of Pediatric Psychology
Siden H
Steele R
Stephenson E
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2016.10.298" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2016.10.298</a>
<a href="http://www.sciencedirect.com/science/article/pii/S0885392416306704" target="_blank" rel="noreferrer noopener">http://www.sciencedirect.com/science/article/pii/S0885392416306704</a>
Dublin Core
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
P259 A Scoping Review to Examine Symptoms in Children with Rare, Progressive, Life-Threatening Disorders
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
Siden H; Widger K; Gregoire MC; Dewan T; Harvey B; Hermansen AM; Pawliuk C; Brown H; Beck C; Steele R
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2016.10.298" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2016.10.298</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2016-12
2016
Backlog
Beck C
Brown H
Dewan T
Grégoire MC
Harvey B
Hermansen AM
Journal Article
Journal of Pain and Symptom Management
Pawliuk C
Q3 Scoping Review
Siden H
Steele R
Widger K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="https://ubcmj.com/physician-stress-in-the-context-of-medical-aid-in-dying/" target="_blank" rel="noreferrer">https://ubcmj.com/physician-stress-in-the-context-of-medical-aid-in-dying/</a>
Dublin Core
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
Physician stress in the context of medical aid in dying
Publisher
An entity responsible for making the resource available
University of British Columbia Medical Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
Siden H
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2016-09
2016
Backlog
Journal Article
Siden H
University of British Columbia Medical Journal
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1093/pch/20.3.155" target="_blank" rel="noreferrer">http://doi.org/10.1093/pch/20.3.155</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
Introducing a Lexicon of Terms for Pediatric Palliative Care
Publisher
An entity responsible for making the resource available
Paediatrics & Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
PEDI Study
Creator
An entity primarily responsible for making the resource
Spicer S; Macdonald ME; Davies D; Vadeboncoeur C; Siden H
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/pch/20.3.155" target="_blank" rel="noreferrer">10.1093/pch/20.3.155</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2015
2015
Backlog
Davies D
Journal Article
Macdonald ME
Paediatrics & Child Health
PEDI Study
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
Backlog
URL Address
<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403275/" target="_blank" rel="noreferrer noopener">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403275/</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: Children and families living with progressive life-threatening conditions
Publisher
An entity responsible for making the resource available
Paediatrics & Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Creator
An entity primarily responsible for making the resource
Siden H; Steele R
Description
An account of the resource
OBJECTIVES: To increase awareness of the topic of paediatric palliative care among practicing physicians in Canada by exploring the impact of a child’s neurological or rare genetic life-threatening condition on the affected child and his/her parents. METHODS: Cross-sectional, baseline results from an observational, longitudinal study, Charting the Territory, which followed 275 children and 390 parents from 258 families. Parents completed multiple surveys, for themselves and their child. RESULTS: These children had a high symptom burden. The three most common symptoms were pain, sleep problems and feeding difficulties; on average, they had 3.2 symptoms of concern. Despite analgesic use, the frequency of pain episodes and distress were invariant over time, suggesting that treatments were not successful. Parents experienced anxiety, depression and burden; at the same time they also reported positive life change and a high degree of spirituality. The child’s condition resulted in parental changes in living arrangements, work status and hours devoted to caregiving. Nearly two-thirds of families were involved with a palliative care team; the size of the community in which a family resided did not make a significant difference in such involvement. CONCLUSIONS: These families experience many challenges, for the patient, other individual members and the family as a whole. At least some of these challenges may be alleviated by early and organized palliative care. Effective interventions are needed to enhance symptom management for the ill child and to alleviate the various negative impacts on the family.
2015-04
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2015
Backlog
Charting the territory
Journal Article
Paediatrics & Child Health
Siden H
Steele R
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1089/jpm.2016.0177" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2016.0177</a>
<a href="http://www.ncbi.nlm.nih.gov/pubmed/27455077" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/pubmed/27455077</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 program versus usual care and healthcare resources utilization in British Columbia: a matched-pairs cohort study
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
2015
Creator
An entity primarily responsible for making the resource
Conte T; Mitton C; Erdelyi S; Siden H; Chavoshi N
Description
An account of the resource
BACKGROUND: Evidence on the impact of pediatric palliative care programs (PPCP) on resource utilization is scarce and requires broader measures to include utilization beyond the hospital setting. OBJECTIVE: This research aims to provide a Canadian comparative analysis between children in a PPCP with those under usual care, including hospice use to inpatient resource use measurement. METHODS: We conducted a retrospective matched-pairs (disease and age at death) cohort comparison of children who died in hospice versus hospital (never enrolled in a PPCP), from 2008 to 2012. Utilization was retrieved from administrative databases and chart review. The main outcomes were number of admissions and length of stay (LOS). RESULTS: Eleven pairs were found. PPCP users were more likely to have advanced directives (100% vs. 27%). After controlling for disease and age, we found no significant difference in number of admissions; however, PPCP users had an increase in admissions post-referral compared to pre-referral (median 3.08 admissions), driven by the need for critical care. We did not find a significant difference in LOS, but observed longer admissions among PPCP users pre- (1.91 days/month) and post-referral (3.66 days/month) compared to usual care. Over 60% of inpatient utilization shifted to the hospice post-referral. DISCUSSION: The terminal pediatric population referred to PPCP may systematically differ from those under usual care even before enrollment, presenting with higher inpatient utilization in critical care nearing death. A significant portion of inpatient utilization shifted to the hospice, with implications for resource reallocation and enhancements in PPCP referrals.
2015-07
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2016.0177" target="_blank" rel="noreferrer">10.1089/jpm.2016.0177</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2015
Backlog
Chavoshi N
Conte T
Erdelyi S
Journal Article
Journal of Palliative Medicine
Mitton C
Siden H