1
40
39
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January 2022 List
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<a href="http://doi.org/10.1089/jpm.2021.0439" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2021.0439</a>
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Title
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Top Ten Tips Palliative Care Clinicians Should Know About Prognostication in Children
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Journal of Palliative Medicine
Date
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2021
Subject
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complex chronic conditions; pediatric palliative care; communication issues in pediatrics; palliative care in neonatology; prognostication in children
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Bergstraesser E; Thienprayoon R; Brook LA; Fraser LK; Hynson JL; Rosenberg AR; Snaman JM; Weaver MS; Widger K; Zernikow B; Jones CA; Schlögl M
Description
An account of the resource
Pediatric palliative care (PPC) is different from palliative care (PC) for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular difficulty to predict the future of an individual, severely ill child. This article aims to provide an overview and critical reflection of different aspects of prognostication in children with PC needs. This includes different diseases from neurology to oncology, from the unborn baby to the young adult, new approaches in treatment, advance care planning, and, most important, communication with the affected child as well as parents.
Identifier
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<a href="http://doi.org/10.1089/jpm.2021.0439" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0439</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Bergstraesser E
Brook LA
communication issues in pediatrics
Complex Chronic Conditions
Fraser LK
Hynson JL
January 2022 List
Jones CA
Journal of Palliative Medicine
palliative care in neonatology
Pediatric Palliative Care
prognostication in children
Rosenberg AR
Schlögl M
Snaman JM
Thienprayoon R
Weaver MS
Widger K
Zernikow B
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 2021 List
Text
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April 2021 List
URL Address
<a href="http://doi.org/10.1186/s12904-020-00703-0" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-020-00703-0</a>
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Title
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Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach
Publisher
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BMC Palliative Care
Date
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2021
Subject
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Pediatric palliative care; Pediatric hospice care; Home-based care; Experience with care; Instrument development
Creator
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Boyden JY; Feudtner C; Deatrick JA; Widger K; LaRagione G; Lord B; Ersek M
Description
An account of the resource
Background: Many children with serious illnesses are receiving palliative and end-of-life care from pediatric palliative and hospice care teams at home (PPHC@Home). Despite the growth in PPHC@Home, no standardized measures exist to evaluate whether PPHC@Home provided in the U.S. meets the needs and priorities of children and their families. Method(s): We developed and conducted a preliminary evaluation of a family-reported measure of PPHC@Home experiences using a multi-method, multi-stakeholder approach. Our instrument development process consisted of four phases. Item identification and development (Phase 1) involved a comprehensive literature search of existing instruments, guidelines, standards of practice, and PPHC@Home outcome studies, as well as guidance from a PPHC stakeholder panel. Phase 2 involved the initial item prioiritization and reduction using a discrete choice experiment (DCE) with PPHC professionals and parent advocates. Phase 3 involved a second DCE with bereaved parents and parents currently receiving care for their child to further prioritize and winnow the items to a set of the most highly-valued items. Finally, we conducted cognitive interviews with parents to provide information about the content validity and clarity of the newly-developed instrument (Phase 4). Result(s): Items were compiled predominantly from three existing instruments. Phase 2 participants included 34 PPHC providers, researchers, and parent advocates; Phase 3 participants included 47 parents; and Phase 4 participants included 11 parents. At the completion of Phase 4, the Experiences of Palliative and Hospice Care for Children and Caregivers at Home (EXPERIENCE@Home) Measure contains 22 of the most highly-valued items for evaluating PPHC@Home. These items include "The care team treats my child's physical symptoms so that my child has as good a quality of life as possible", "I have regular access to on-call services from our care team", and "The nurses have the knowledge, skills, and experience to support my child's palliative or hospice care at home." Conclusion(s): The EXPERIENCE@Home Measure is the first known to specifically measure family-reported experiences with PPHC@Home in the U.S. Future work will include formal psychometric evaluation with a larger sample of parents, as well as evaluation of the clinical utility of the instrument with PPHC@Home teams. Copyright © 2021, The Author(s).
Identifier
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<a href="http://doi.org/10.1186/s12904-020-00703-0" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00703-0</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
April 2021 List
BMC Palliative Care
Boyden JY
Deatrick JA
Ersek M
Experience with care
Feudtner C
Home-based Care
instrument development
LaRagione G
Lord B
Pediatric Hospice Care
Pediatric Palliative Care
Widger K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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June 2021 List
Text
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Citation List Month
June 2021 List
URL Address
<a href="http://doi.org/10.1186/s12904-020-00620-2" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-020-00620-2</a>
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Transition from children's to adult services for adolescents/young adults with life-limiting conditions: developing realist programme theory through an international comparison
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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adolescent; Continuity of Patient Care; life-limiting conditions; young adult
Creator
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Kerr H; Widger K; Cullen-Dean G; Price J; O'Halloran P
Description
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BACKGROUND: Managing transition of adolescents/young adults with life-limiting conditions from children's to adult services has become a global health and social care issue. Suboptimal transitions from children's to adult services can lead to measurable adverse outcomes. Interventions are emerging but there is little theory to guide service developments aimed at improving transition. The Transition to Adult Services for Young Adults with Life-limiting conditions (TAYSL study) included development of the TASYL Transition Theory, which describes eight interventions which can help prepare services and adolescents/young adults with life-limiting conditions for a successful transition. We aimed to assess the usefulness of the TASYL Transition Theory in a Canadian context to identify interventions, mechanisms and contextual factors associated with a successful transition from children's to adult services for adolescents/young adults; and to discover new theoretical elements that might modify the TASYL Theory. METHODS: A cross-sectional survey focused on organisational approaches to transition was distributed to three organisations providing services to adolescents with life-limiting conditions in Toronto, Canada. This data was mapped to the TASYL Transition Theory to identify corresponding and new theoretical elements. RESULTS: Invitations were sent to 411 potentially eligible health care professionals with 56 responses from across the three participating sites. The results validated three of the eight interventions: early start to the transition process; developing adolescent/young adult autonomy; and the role of parents/carers; with partial support for the remaining five. One new intervention was identified: effective communication between healthcare professionals and the adolescent/young adult and their parents/carers. There was also support for contextual factors including those related to staff knowledge and attitudes, and a lack of time to provide transition services centred on the adolescent/young adult. Some mechanisms were supported, including the adolescent/young adult gaining confidence in relationships with service providers and in decision-making. CONCLUSIONS: The Transition Theory travelled well between Ireland and Toronto, indicating its potential to guide both service development and research in different contexts. Future research could include studies with adult service providers; qualitative work to further explicate mechanisms and contextual factors; and use the theory prospectively to develop and test new or modified interventions to improve transition.
Identifier
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<a href="http://doi.org/10.1186/s12904-020-00620-2" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00620-2</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adolescent
BMC Palliative Care
Continuity Of Patient Care
Cullen-Dean G
June 2021 List
Kerr H
Life-limiting Conditions
O'Halloran P
Price J
Widger K
Young Adult
-
Dublin Core
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Title
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February 2022 List
Text
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February 2022 List
URL Address
<a href="http://doi.org/10.1089/jpm.2021.0175" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2021.0175</a>
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Children's Health Care Utilization and Cost in the Last Year of Life: A Cohort Comparison with and without Regional Specialist Pediatric Palliative Care
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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pediatrics; palliative care; health care; cost; utilization
Creator
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Lysecki DL; Gupta S; Rapoport A; Rhodes E; Spruin S; Vadeboncoeur C; Widger K; Tanuseputro P
Description
An account of the resource
Background: Research remains inconclusive regarding the impact of specialist pediatric palliative care (SPPC) on health care utilization and cost. Objective: To better understand and quantify the impact of regional SPPC services on children's health care utilization and cost near end of life. Design: A retrospective cohort study used administrative databases to compare outcomes for child decedents (age 31 days to 19 years) from two similar regions in Ontario, Canada between 2010 and 2014, wherein one region had SPPC services (SPPC+) and the other did not (SPPC−). Measurements: Administrative databases provided demographics, health care utilization (days), and costs Canadian dollars) across settings in the last year of life, and location of death. Multivariable analyses produced relative rates (RRs) of health care days (acute and home care), intensive care unit (ICU) days, and health care costs (inpatient, outpatient, home, and physician) as well as the odds ratio (OR) of in-hospital death. Counterfactual analysis quantified the differences in utilization and costs. Results: A total of 807 children were included. On multivariable analysis, residence in the SPPC+ region (n = 363) was associated with fewer mean health care days (RR = 0.73; 95% confidence interval [CI]: 0.59–0.90); fewer mean ICU days (RR = 0.64; 95% CI: 0.44–0.94); lower mean health care costs (RR = 0.71; 95% CI: 0.56–0.91); and lower likelihood of in-hospital death (OR = 0.67; 95% CI: 0.49–0.92). The counterfactual analysis estimated mean reductions of 16.2 days (95% CI: 14.4–18.0) and $24,940 (95% CI: $21,703–$28,177) per child in the SPPC+ region. Conclusions: Although not a causal study, these results support an association between regional SPPC services and decreased health care utilization, intensity, and cost for children near end of life.
Identifier
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<a href="http://doi.org/10.1089/jpm.2021.0175" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0175</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Cost
February 2022 List
Gupta S
Health Care
Journal of Palliative Medicine
Lysecki DL
Palliative Care
Pediatrics
Rapoport A
Rhodes E
Spruin S
Tanuseputro P
utilization
Vadeboncoeur C
Widger K
-
Dublin Core
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Title
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February 2022 List
Text
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February 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.11.017" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.11.017</a>
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Title
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Education in Palliative and End-of-Life Care-Pediatrics: Curriculum use and dissemination
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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palliative care; education; survey; Pediatric; training; curriculum
Creator
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Postier AC; Wolfe J; Hauser J; Remke SS; Baker JN; Kolste A; Dussel V; Bernadá M; Widger K; Rapoport A; Drake R; Chong PH; Friedrichsdorf SJ
Description
An account of the resource
CONTEXT: The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and dissemination project was created in 2011 in response to this widespread education and training need. Since its implementation, EPEC-Pediatrics has evolved and has been disseminated worldwide. OBJECTIVES: Assessment of past EPEC-Pediatrics participants' ("Trainers") self-reported PPC knowledge, attitudes, and skills; use of the curriculum in teaching; and feedback about the program's utility and future direction. METHODS: 2011 - 2019 survey of EPEC-Pediatrics past conference participants, using descriptive and content analyses. RESULTS: 172/786 (22% response rate) EPEC-Pediatrics past participants from 59 countries across 6 continents completed the survey. Trainers, including Master Facilitators (MFs), used the curriculum mostly to teach interdisciplinary clinicians and reported improvement in teaching ability as well as in attitude, knowledge, and skills (AKS) in two core domains of PPC: communication and pain and symptom management. The most frequently taught modules were about multimodal management of distressing symptoms. Trainers suggested adding new content to the current curriculum and further expansion in low-medium income countries. Most (71%) reported improvements in the clinical care of children with serious illnesses at their own institutions. CONCLUSION: EPEC-Pediatrics is a successful curriculum and dissemination project that improves participants' self-reported teaching skills and AKS's in many PPC core domains. Participating clinicians not only taught and disseminated the curriculum content, they also reported improvement in the clinical care of children with serious illness.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.11.017" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.11.017</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Baker JN
Bernadá M
Chong PH
Curriculum
Drake R
Dussel V
Education
February 2022 List
Friedrichsdorf SJ
Hauser J
Journal of Pain and Symptom Management
Kolste A
Palliative Care
Pediatric
Postier AC
Rapoport A
Remke SS
Survey
Training
Widger K
Wolfe J
-
Dublin Core
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Title
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February 2019 List
Text
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Citation List Month
February 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.416" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.416</a>
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Title
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Evaluation of End-of-Life Care Programs at Emily's House Children's Hospice
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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pain; death; dyspnea; major clinical study; neoplasm; hospice; seizure; conference abstract; human; child; female; male; diagnosis; terminal care; patient care
Creator
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Ross S; Daffern K; Widger K; Rapoport A; Salminen R
Description
An account of the resource
Background: Emily's House Children's Hospice (EH) located in Toronto, Canada provides respite, transitional care, symptom management, and end-of-life (EoL) care. Children with serious medical conditions and their families may access any program over months or years but some only access EoL care.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.416" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.416</a>
2018
Child
conference abstract
Daffern K
Death
Diagnosis
Dyspnea
February 2019 List
Female
Hospice
Human
Journal of Pain and Symptom Management
Major Clinical Study
Male
Neoplasm
Pain
Patient Care
Rapoport A
Ross S
Salminen R
Seizure
Terminal Care
Widger K
-
Dublin Core
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Title
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August 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
August 2021 List
URL Address
<a href="http://doi.org/10.1177/13674935211026113" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/13674935211026113</a>
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Self-reported experiences of siblings of children with life-threatening conditions: A scoping review
Publisher
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Journal of Child Health Care
Date
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2021
Subject
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children; critical illness; scoping review; Sibling(s)
Creator
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Tay J; Widger K; Stremler R
Description
An account of the resource
Sibling relationships are one of the most long-lasting and influential relationships in a human's life. Living with a child who has a life-threatening condition changes healthy siblings' experience. This scoping review summarized and mapped research examining healthy siblings' experience of living with a child with a life-threatening condition to identify knowledge gaps and provide direction for future research. Studies were identified through five electronic databases. Of the 34 included studies, 17 used qualitative methods, four gathered data longitudinally and 24 focused on children with cancer. Four broad themes of sibling experience were identified across studies: family functioning, psychological well-being, social well-being, and coping. Siblings experienced challenges and difficulties over the course of the child's illness. Future research should incorporate longitudinal designs to better understand the trajectory of siblings' experiences and focus on a wider variety of life-threatening conditions.
Identifier
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<a href="http://doi.org/10.1177/13674935211026113" target="_blank" rel="noreferrer noopener">10.1177/13674935211026113</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
August 2021 List
Children
Critical Illness
Journal Of Child Health Care
Scoping review
Sibling(s)
Stremler R
Tay J
Widger K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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February 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/10.1089/jpm.2018.0420" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1089/jpm.2018.0420</a>
Dublin Core
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Title
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Indicators Used to Assess the Impact of Specialized Pediatric Palliative Care: A Scoping Review
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
palliative care; pediatrics; quality indicators; review literature
Creator
An entity primarily responsible for making the resource
Widger K; Medeiros C; Trenholm M; Zuniga-Villanueva G; Streuli J C
Description
An account of the resource
BACKGROUND: Specialized pediatric palliative care programs aim to improve quality of life and ease distress of patients and their families across the illness trajectory. These programs require further development, which should be based on how they improve outcomes for patients, families, health care professionals, and the health care system. OBJECTIVE: To identify and compare definitions of indicators used to assess the impact of specialized pediatric palliative care programs. DESIGN: The scoping review protocol was prospectively registered on PROSPERO 2017 (CRD42017074090). DATE SOURCES: MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase databases were searched from January 2000 to September 2018. Eligible studies included randomized controlled trials, experimental studies, or observational studies that compared specialized programs with usual care. Studies were excluded if most care recipients were older than 19 years or the article was not available in English, French, German, or Spanish. RESULTS: Forty-six studies were included; one was a randomized controlled trial. We identified 82 different indicators grouped into 14 domains. The most common indicators included the following: location of death, length of stay in hospital, and number of hospital admissions. Only 22 indicators were defined identically in at least 2 studies. Only one study included children's perspectives in assessing indicators. CONCLUSIONS: Many indicators were used to assess program outcomes with little definition consensus across studies. Development of a set of agreed-upon indicators to assess program impact concurrent with family and patient input is essential to advance research and practice in pediatric palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2018.0420" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0420</a>
2018
February 2019 List
Journal of Palliative Medicine
Medeiros C
Palliative Care
Pediatrics
Quality Indicators
review literature
Streuli J C
Trenholm M
Widger K
Zuniga-Villanueva G
-
Dublin Core
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Title
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Special Edition #2 2022 List
Text
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Citation List Month
Special Edition #2
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.07.024" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.07.024</a>
Dublin Core
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Title
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What do parents value regarding pediatric palliative and hospice care in the home setting?
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
discrete choice experiment; home-based care; pediatric hospice care; pediatric palliative care
Creator
An entity primarily responsible for making the resource
Boyden JY; Ersek M; Deatrick JA; Widger K; LaRagione G; Lord BT; Feudtner C
Description
An account of the resource
CONTEXT: Children with life-shortening serious illnesses and medically complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most. OBJECTIVE: To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home. METHODS: Twenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains. RESULTS: Forty-seven parents participated. Overall, highest-rated domains included Physical Aspects of Care: Symptom Management, Psychological/EmotionalSupportfor the Child, and Care Coordination. Lowest-rated domains included Spiritual and Religious Aspects of Care and Cultural Aspects of Care. In exploratory analyses, parents who had other children rated the Psychological/Emotional Aspects of Care for the Sibling(s) domain significantly higher than parents who did not have other children (P=0.02). Furthermore, bereaved parents rated the CaregiverSupportat the End of Life domain significantly higher than parents who were currently caring for their child (P=0.04). No other significant differences in domain ratings were observed. CONCLUSIONS: Knowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.07.024" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.07.024</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
2022 Special Edition 2 - Parent Perspectives
Boyden JY
Deatrick JA
discrete choice experiment
Ersek M
Feudtner C
Home-based Care
Journal of Pain and Symptom Management
LaRagione G
Lord BT
Pediatric Hospice Care
Pediatric Palliative Care
Widger K
-
Dublin Core
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PedPalASCNet Member Publications
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A collection of relevant articles published by one or more of PedPalASCNet's members
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Backlog
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<a href="http://doi.org/10.1542/peds.2009-0722" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2009-0722</a>
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Culturally-sensitive information-sharing in pediatric palliative care
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Pediatrics
Date
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2010
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Davies B; Contro N; Larson J; Widger K
Description
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OBJECTIVES: This study aimed to learn about experiences of Mexican American and Chinese American families who require pediatric palliative care. This article describes parents' perceptions of information-sharing by health care providers during their child's hospitalizations and at their child's death. METHODS: The study used a retrospective design of grounded theory analysis. Participants included 36 parents (26 Mexican American and 10 Chinese American) from 28 families who experienced between 6 months and 5 years before study participation the death of a child who was aged
2010
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<a href="http://doi.org/10.1542/peds.2009-0722" target="_blank" rel="noreferrer">10.1542/peds.2009-0722</a>
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Type
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Journal Article
2010
Backlog
Contro N
Davies B
Journal Article
Larson J
Pediatrics
Widger K
-
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PedPalASCNet Member Publications
Subject
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A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="https://books.google.ca/books?id=rAZiOwTY7uUC&pg=PA96&lpg=PA96&dq=Research+considerations+in+pediatric+palliative+care&source=bl&ots=_2LYGGhnZ4&sig=MgUIcBYf0kZ0cA6V0dlzn3L--6w&hl=en&sa=X&ved=0ahUKEwjdsK2d56bRAhUG8GMKHZqtB9AQ6AEIRTAH#v=onepage&q=Research%20considerations%20in%20pediatric%20palliative%20care&f=false" target="_blank" rel="noreferrer">https://books.google.ca/books?id=rAZiOwTY7uUC&pg=PA96&lpg=PA96&dq=Research+considerations+in+pediatric+palliative+care&source=bl&ots=_2LYGGhnZ4&sig=MgUIcBYf0kZ0cA6V0dlzn3L--6w&hl=en&sa=X&ved=0ahUKEwjdsK2d56bRAhUG8GMKHZqtB9AQ6AEIRTAH#v=onepage&q=Research%20considerations%20in%20pediatric%20palliative%20care&f=false</a>
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Research considerations in pediatric palliative care
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Davies B; Widger K; Steele R; Cadell S; Siden H; Straatman L
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New York: Elsevier
Date
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2011
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In Wolff J, Sourkes B, & Hinds P (Eds.) Textbook of Interdisciplinary Pediatric Palliative Care, First Edition. New York: Elsevier, 96-103.
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2011
Cadell S
Davies B
Siden H
Steele R
Straatman L
Widger K
-
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Title
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PedPalASCNet Member Publications
Subject
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A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2017 List
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Title
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Identifying Indicators Of Quality Pediatric Palliative Care: A Systematic Review
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Journal Of Pain And Symptom Management
Date
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2016
Creator
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Duc J; Widger K; Johnston K; Rapoport A; Siden H; Feudtner C; Wolfe J
Description
An account of the resource
Pediatric palliative care (PPC) is a relatively new but rapidly expanding specialty area with a variety of models of care provision. Identification and validation of quality indicators specific to PPC is essential to accurately monitor and assess the quality of care provided to children with life-threatening conditions and their families. Objectives: We conducted a systematic review to identify structure, process and outcome indicators of quality palliative care for children with life-threatening conditions and their families, and evaluate how these indicators are measured. Methods: We conducted our search using three electronic databases (CINAHL, MEDLINE, Embase) and a combination of the following key word terms: palliative care, healthcare quality, and quality assessment / improvement / measurement / metrics or preferred practices. Results were limited to studies in children, aged 0-18 years. Book chapters, theses and conference abstracts were excluded. Titles and abstracts were reviewed for relevance, followed by full article review for all retained articles. Two reviewers were involved at each level of review. Results: After removal of duplicates, 5909 titles and abstracts were screened for relevance, 1322 full articles were reviewed, and 121 articles were included in the final review. Key indicators included: availability of specialised PPC services (including bereavement care); proportion of children suffering from a variety of symptoms; proportion of families with documented discussions of goals of care; proportion of children dying in their preferred location; and proportion of parents satisfied with PPC service provision. Conclusions: There are a number of indicators and associated measures for assessing the quality of pediatric palliative care, however further work is required to validate these indicators and identify additional outcome indicators. Identification of key quality indicators provides a foundation for critical validation work and assessment of the impact of interventions designed to improve the quality of pediatric palliative care.
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DOI: http://dx.doi.org/10.1016/j.jpainsymman.2016.10.294
2016
Duc J
February 2017 List
Feudtner C
Johnston K
Journal of Pain and Symptom Management
Rapoport A
Siden H
Widger K
Wolfe J
-
Dublin Core
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Title
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2023 Special Edition 2 - Parent Perspectives List
Text
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Citation List Month
2024 SE2 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1080/07481187.2017.1334009" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/07481187.2017.1334009</a>
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Title
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Siblings’ voices: A prospective investigation of experiences with a dying child
Publisher
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Death Studies
Date
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2018
Subject
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Death and Dying; dying child; families; Family; Hospitals; life experiences; Life Experiences; peers; Peers; siblings; Siblings
Creator
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Eaton RC; Widger K; Beaune L; Neville A; Cadell S; Steele R; Rapoport A; Rugg M; Barrera M
Description
An account of the resource
Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal, qualitative study over 2 years using interpretive descriptive methodology to understand siblings’ perspectives when a brother or sister was dying at home or in hospital. The insights from the 10 siblings revealed complex experiences, both personal and with the ill child, their families, and peers. These experiences were paradoxically sources of strain and of support, revealing the importance of validation and normalization in assisting siblings to successfully navigate the experience. (PsycINFO Database Record (c) 2019 APA, all rights reserved)
Identifier
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<a href="http://doi.org/10.1080/07481187.2017.1334009" target="_blank" rel="noreferrer noopener">10.1080/07481187.2017.1334009</a>
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2018
2024 SE2 - Parent Perspectives
Barrera M
Beaune L
Cadell S
Death and Dying
Death studies
dying child
Eaton RC
Families
Family
Hospitals
Life Experiences
Neville A
peers
Rapoport A
Rugg M
Siblings
Steele R
Widger K
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1542/peds.2020-003780" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2020-003780</a>
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End-of-Life Childhood Cancer Research: A Systematic Review
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Oncology
Creator
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Hasan F; Widger K; Sung L; Wheaton L
Description
An account of the resource
CONTEXT: Children with incurable cancer may participate in research studies at the end of life (EOL). These studies create knowledge that can improve the care of future patients. OBJECTIVE: To describe stakeholder perspectives regarding research studies involving children with cancer at the EOL by conduct of a systematic review. DATA SOURCES: We used the following data sources: Ovid Medline, Embase, the Cumulative Index to Nursing and Allied Health Literature, PsycINFO, Web of Science, and ProQuest (inception until August 2020). STUDY SELECTION: We selected 24 articles published in English that examined perceptions or experiences of research participation for children with cancer at the EOL from the perspectives of children, parents, and health professionals (HPs). DATA EXTRACTION: Two authors independently extracted data, assessed study quality, and performed thematic analysis and synthesis. RESULTS: Eight themes were identified: (1) seeking control; (2) faith, hope, and uncertainty; (3) being a good parent; (4) helping others; (5) barriers and facilitators; (6) information and understanding; (7) the role of HPs in consent and beyond; and (8) involvement of the child in decision-making. LIMITATIONS: Study designs were heterogeneous. Only one study discussed palliative care research. CONCLUSIONS: Some families participate in EOL research seeking to gain control and sustain hope, despite uncertainty. Other families choose against research, prioritizing quality of life. Parents may perceive research participation as the role of a “good parent” and hope to help others. HPs have positive views of EOL research but fear that parents lack understanding of the purpose of studies and the likelihood of benefit. We identified barriers to research participation and informed consent.
Identifier
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<a href="http://doi.org/10.1542/peds.2020-003780" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-003780</a>
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2021
2021 Special Edition - Oncology
Hasan F
Oncology
Pediatrics
Sung L
Wheaton L
Widger K
-
Dublin Core
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Title
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2022 Special Edition 3 - Oncology List
Text
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Citation List Month
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.084" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.02.084</a>
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Impact of Specialized Versus General Palliative Care on the Intensity of Medical Care at the End of Life in Adolescents and Young Adults with Cancer: A Population-Based Cohort Study
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Journal of Pain and Symptom Management
Date
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2022
Creator
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Kassam A; Gupta A; Rapoport A; Srikanthan A; Sutradhar R; Luo J; Widger K; Wolfe J; Earle C; Gupta S
Description
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Outcomes: 1. Explain the impact of specialized palliative care on reducing high-intensity end-of-life care in adolescents and young adults with cancer 2. Identify subpopulations among adolescents and young adults with cancer who are at highest risk for reduced access to specialized palliative care Original Research Background: A high proportion of adolescents and young adults (AYAs) with cancer (ages 15-39 years) receive high-intensity (HI) medical care at the end of life (EOL). We have previously shown that palliative care (PC) involvement in this population is associated with lower risk of HI-EOL care. Whether this association differs by specialized or general PC (SPC, GPC) is unknown. Research Objectives: To evaluate the prevalence and predictors of SPC in AYAs with cancer and to evaluate the impact of SPC versus GPC on the intensity of EOL care for AYAs. Method(s): A decedent cohort of AYAs with cancer who died between 2000 and 2017 in Ontario, Canada was assembled from registries and linked to population-based healthcare data. Based on prior studies, the primary composite measure HI-EOL care included any of intravenous chemotherapy <14 days from death, >1 ED visit, and >1 hospitalization or ICU admission <30 days from death. SPC and GPC were defined via previously validated algorithms based on physician billing codes (SPC if practice consisted of >=50% PC-specific billing codes and GPC if PC-specific billing codes were between 10% and 50%). Result(s): Of 7,122 AYAs, 2,140 (30%) received SPC and 942 (13.2%) received GPC. AYAs with hematologic malignancies, male AYAs, and rural AYAs were least likely to have access to SPC. No PC involvement compared to GPC was associated with higher odds of receiving HI-EOL care (OR 1.5; 95% CI, 1.3-1.8; P <.001). However, SPC was associated with the lowest risk of HI-EOL care (OR vs GPC 0.8; 95% CI, 0.7-0.9; P = 0.007). SPC was also associated with decreased odds of ICU admission compared with GPC (OR 0.7; 95% CI, 0.5-0.9; P = 0.006). Conclusion(s): SPC is associated with a lower risk of HI-EOL care in AYAs with cancer as compared to GPC. However, access to SPC remains a challenge. Implications for Research, Policy, or Practice: Our study supports the widespread provision of SPC to AYAs with cancer. Copyright © 2022
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.084" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.084</a>
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2022
2022 Special Edition 3 - Oncology List
Earle C
Gupta A
Gupta S
Journal of Pain and Symptom Management
Kassam A
Luo J
Rapoport A
Srikanthan A
Sutradhar R
Widger K
Wolfe J
-
Dublin Core
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1200/JCO.20.03698" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1200/JCO.20.03698</a>
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Impact of Palliative Care Involvement on End-of-Life Care Patterns Among Adolescents and Young Adults With Cancer: A Population-Based Cohort Study
Publisher
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Journal of Clinical Oncology
Date
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2021
Subject
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Oncology
Creator
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Kassam A; Gupta A; Rapoport A; Srikanthan A; Sutradhar R; Luo J; Widger K; Wolfe J; Earle C; Gupta S
Description
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PURPOSEEvidence suggests that adolescents and young adults (AYAs) with cancer (defined as age 15-39 years) receive high-intensity (HI) medical care at the end-of-life (EOL). Previous population-level studies are limited and lack information on the impact of palliative care (PC) provision. We evaluated prevalence and predictors of HI-EOL care in AYAs with cancer in Ontario, Canada. A secondary aim was to evaluate the impact of PC physicians on the intensity of EOL care in AYAs.METHODSA retrospective decedent cohort of AYAs with cancer who died between 2000 and 2017 in Ontario, Canada, was assembled using a provincial registry and linked to population-based health care data. On the basis of previous studies, the primary composite measure HI-EOL care included any of the following: intravenous chemotherapy < 14 days from death, more than one emergency department visit, and more than one hospitalization or intensive care unit admission < 30 days from death. Secondary measures included the most invasive (MI) EOL care (eg, mechanical ventilation < 14 days from death) and PC physician involvement. We determined predictors of outcomes using appropriate regression models.RESULTSOf 7,122 AYAs, 43.8% experienced HI-EOL care. PC physician involvement (odds ratio [OR], 0.57; 95% CI, 0.51 to 0.63) and older age at death (OR, 0.60; 95% CI, 0.48 to 0.74) were associated with a lower risk of HI-EOL care. AYAs with hematologic malignancies were at highest risk for HI and MI-EOL care. PC physician involvement substantially reduced the odds of mechanical ventilation at EOL (OR, 0.36; 95% CI, 0.30 to 0.43).CONCLUSIONA large proportion of AYAs with cancer experience HI-EOL care. Our study provides strong evidence that PC physician involvement can help mitigate the risk of HI and MI-EOL care in AYAs with cancer.
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<a href="http://doi.org/10.1200/JCO.20.03698" target="_blank" rel="noreferrer noopener">10.1200/JCO.20.03698</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2021 Special Edition - Oncology
Earle C
Gupta A
Gupta S
Journal Of Clinical Oncology
Kassam A
Luo J
Oncology
Rapoport A
Srikanthan A
Sutradhar R
Widger K
Wolfe J
-
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Title
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February 2021 List
Text
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February 2021 List
URL Address
<a href="http://doi.org/10.1089/jpm.2020.0496" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2020.0496</a>
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Pediatric Project ECHO®: A Virtual Community of Practice to Improve Palliative Care Knowledge and Self-Efficacy among Interprofessional Health Care Providers
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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pediatric palliative care; continuing professional development; distance education; Project ECHO
Creator
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Lalloo C; Osei-Twum J; Rapoport A; Vadeboncoeur C; Weingarten K; Veldhuijzen van Zanten S; Widger K; Stinson J
Description
An account of the resource
Background: Health care providers (HCPs) require ongoing training and mentorship to fully appreciate the palliative care needs of children. Project ECHO® (Extension for Community Healthcare Outcomes) is a model for delivering technology-enabled interprofessional education and cultivating a community of practice among HCPs who care for children with life-limiting illness. Objectives: To develop, implement, and evaluate the Project ECHO model within the pediatric palliative care (PPC) context. Specific objectives were to evaluate (1) participation levels, (2) program acceptability, (3) HCP knowledge changes, (4) HCP self-efficacy changes, and (5) perceived practice changes after six months. Intervention: An interprofessional PPC curriculum was informed by a needs assessment. The curriculum was delivered through monthly virtual 90-minute TeleECHO sessions (didactic presentation and case-based learning) from January 2018 to December 2019. The program was freely available to all HCPs wishing to participate. Design: A mixed-methods design with repeat measures was used. Surveys were distributed at baseline and six months to assess outcomes using 7-point Likert scales. Descriptive and inferential statistical analyses were conducted. The study was approved by the Research Ethics Board at the Hospital for Sick Children. Results: Twenty-four TeleECHO sessions were completed with a mean of 32 ± 12.5 attendees. Acceptability scores (n = 43) ranged from 5.1 ± 1.1 to 6.5 ± 0.6. HCPs reported improvements in knowledge and self-efficacy across most topics (11 out of 12) and skills (8 out of 10) with demonstrated statistical significance (p < 0.05). Most participants reported positive practice impacts, including enhanced ability to provide PPC in their practice. Conclusion: Project ECHO is a feasible and impactful model for fostering a virtual PPC-focused community of practice among interprofessional HCPs.
Identifier
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<a href="http://doi.org/10.1089/jpm.2020.0496" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0496</a>
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2020
continuing professional development
distance education
February 2021 List
Journal of Palliative Medicine
Lalloo C
Osei-Twum J
Pediatric Palliative Care
Project ECHO
Rapoport A
Stinson J
Vadeboncoeur C
Veldhuijzen van Zanten S
Weingarten K
Widger K
-
Dublin Core
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Title
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May 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2018 List
URL Address
<a href="http://doi.org/http://www.mdpi.com/2227-9067/5/3/32" target="_blank" rel="noreferrer noopener">http://doi.org/http://www.mdpi.com/2227-9067/5/3/32</a>
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Title
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Emerging Methodologies in Pediatric Palliative Care Research: Six Case Studies
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
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Nelson K; Feinstein J; Gerhardt C; Rosenberg A; Widger K; Faerber J; Feudtner C
Description
An account of the resource
Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our own areas of research and the novel methods we have identified to target them. Specifically, we discuss potential approaches to: assessing symptoms among nonverbal children, evaluating medical interventions, identifying and treating problems related to polypharmacy, addressing missing data in longitudinal studies, evaluating longer-term efficacy of PPC interventions, and monitoring for inequities in PPC service delivery.
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
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<a href="http://doi.org/10.3390/children5030032" target="_blank" rel="noreferrer noopener">10.3390/children5030032</a>
2018
Children
Faerber J
Feinstein J
Feudtner C
Gerhardt C
May 2018 List
Nelson K
Rosenberg A
Widger K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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>
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Optimising the process for conducting scoping reviews
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BMJ Evidence-Based Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Evidence-Based Medicine; Humans; information science; Publications; Research Design; Q3 Scoping Review
Creator
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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
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<a href="http://doi.org/10.1136/bmjebm-2020-111452" target="_blank" rel="noreferrer noopener">10.1136/bmjebm-2020-111452</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
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.
Citation List Month
Backlog
URL Address
<a href="http://dsp-psd.pwgsc.gc.ca/Collection/CP32-85-2002E.pdf" target="_blank" rel="noreferrer">http://dsp-psd.pwgsc.gc.ca/Collection/CP32-85-2002E.pdf</a>
Dublin Core
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Title
A name given to the resource
Building on Values: The Future of Health Care in Canada. Chapter 7
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
PPC Book Chapter 2011 (Kim Widger)
Creator
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Romanow R; Widger K
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2002
2002
Backlog
Journal Article
PPC Book Chapter 2011 (Kim Widger)
Romanow R
Widger K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2017 List
Notes
<p>1091-7683<br />Russell, Ceilidh Eaton<br />Widger, Kimberley<br />Beaune, Laura<br />Neville, Alexandra<br />Cadell, Susan<br />Steele, Rose<br />Rapoport, Adam<br />Rugg, Maria<br />Barrera, Maru<br />Journal Article<br />United States<br />Death Stud. 2017 May 25. doi: 10.1080/07481187.2017.1334009.</p>
URL Address
<a href="http://dx.doi.org/10.1080/07481187.2017.1334009" target="_blank" rel="noreferrer">http://dx.doi.org/10.1080/07481187.2017.1334009</a>
Dublin Core
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Title
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Siblings' Voices: A Prospective Investigation Of Experiences With A Dying Child
Publisher
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Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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Children; End-of-life; Palliative Care; Pediatrics; Sibling
Creator
An entity primarily responsible for making the resource
Russell CE; Widger K; Beaune L; Neville A; Cadell S; Steele R; Rapoport A; Rugg M; Barrera M
Description
An account of the resource
Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal qualitative study over two years using interpretive descriptive methodology to understand siblings' perspectives when a brother or sister was dying at home or in hospital. The insights from the 10 siblings revealed complex experiences, both personal and with the ill child, their families, and peers. These experiences were paradoxically sources of strain and of support, revealing the importance of validation and normalization in assisting siblings to successfully navigate the experience.
Identifier
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<a href="https://doi.org/10.1080/07481187.2017.1334009" target="_blank" rel="noreferrer">10.1080/07481187.2017.1334009</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Barrera M
Beaune L
Cadell S
Children
Death studies
end-of-life
July 2017 List
Neville A
Palliative Care
Pediatrics
Rapoport A
Rugg M
Russell CE
Sibling
Steele R
Widger K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1186/1471-2431-10-67" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/1471-2431-10-67</a>
Dublin Core
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Title
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Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: charting the territory
Publisher
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BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Child; Humans; Canada; Longitudinal Studies; Mental Disorders; Biomedical Research; PEDI Study; Metabolic Diseases; Genetic Diseases; Inborn; Biomedical Research/methods; Canada; Child; Genetic Diseases Inborn/therapy; Humans; Longitudinal Studies/methods; Mental Disorders/therapy; Metabolic Diseases/therapy
Creator
An entity primarily responsible for making the resource
Siden H; Steele R; Brant R; Cadell S; Davies B; Straatman L; Widger K; Andrews GS
Description
An account of the resource
BACKGROUND: Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the condition progresses along an uncertain trajectory towards death. Much is known about the genetics and pathophysiology of these diseases, but very little has been documented about the trajectory of symptoms for children with these conditions or the associated experience of their families. A longitudinal study design will help to close this gap in knowledge. METHODS/DESIGN: Charting the Territory is a longitudinal descriptive, correlational study currently underway with children 0-19 years who are diagnosed with progressive neurological, metabolic, or chromosomal conditions and their families. The purpose of the study is to determine and document the clinical progression of the condition and the associated bio-psychosocial-spiritual experiences of the parents and siblings age 7-18 years. Approximately 300 families, both newly diagnosed children and those with established conditions, are being recruited in six Canadian cities. Children and their families are being followed for a minimum of 18 months, depending on when they enroll in the study. Family data collection will continue after the child's death if the child dies during the study period. Data collection includes monthly parental assessment of the child's symptoms; an annual functional assessment of the child; and completion of established instruments every 6 months by parents to assess family functioning, marital satisfaction, health status, anxiety, depression, stress, burden, grief, spirituality, and growth, and by siblings to assess coping and health. Impact of participation on parents is assessed after 1 year and at the end of the study. Chart reviews are conducted at enrollment and at the conclusion of the study or at the time of the child's death. DISCUSSION: Knowledge developed from this study will provide some of the first-ever detailed descriptions of the clinical symptom trajectory of these non-curable progressive conditions and the bio-psychosocial-spiritual aspects for families, from diagnosis through bereavement. Information about developing and implementing this study may be useful to other researchers who are interested in designing a longitudinal study.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/1471-2431-10-67" target="_blank" rel="noreferrer noopener">10.1186/1471-2431-10-67</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2010
Andrews GS
Backlog
Biomedical Research
Bmc Pediatrics
Brant R
Cadell S
Canada
Child
Davies B
Genetic Diseases
Humans
inborn
Journal Article
Longitudinal Studies
Mental Disorders
Metabolic Diseases
PEDI Study
Siden H
Steele R
Straatman L
Widger K
-
Dublin Core
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Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2016.10.298" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2016.10.298</a>
<a href="http://www.sciencedirect.com/science/article/pii/S0885392416306704" target="_blank" rel="noreferrer noopener">http://www.sciencedirect.com/science/article/pii/S0885392416306704</a>
Dublin Core
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Title
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P259 A Scoping Review to Examine Symptoms in Children with Rare, Progressive, Life-Threatening Disorders
Publisher
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Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
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Siden H; Widger K; Gregoire MC; Dewan T; Harvey B; Hermansen AM; Pawliuk C; Brown H; Beck C; Steele R
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2016.10.298" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2016.10.298</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
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
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Title
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April 2019 List
Text
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Citation List Month
April 2019 List
URL Address
<a href="http://doi.org/10.1016/j.pec.2019.02.011" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1016/j.pec.2019.02.011</a>
Dublin Core
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Title
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Impact of specialized pediatric palliative care programs on communication and decision-making
Publisher
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Patient Education & Counseling
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Children; Communication; Pediatrics; Counseling; Palliative care; Decision-making; Specialized pediatric palliative care program
Creator
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Streuli JC; Widger K; Medeiros C; Zuniga-Villanueva G; Trenholm M
Description
An account of the resource
OBJECTIVE: To summarize and analyze the impact of specialized pediatric palliative care (SPPC) programs on communication and decision-making for children with life-threatening conditions. METHODS: Our search strategy covered MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase through September 2018. RESULTS: We reviewed 13 studies analyzing the impact of SPPC programs on communication and decision-making using a wide range of outcome indicators. Study quality was poor in 58% of included papers. SPPC programs improved communication and decision-making between families and healthcare professionals (HCPs), within and between families, and among HCPs. CONCLUSION: SPPC programs generally support and improve communication and decision-making for children with life-threatening conditions, their families and associated HCPs. Families referred to an SPPC program had more discussions with HCPs on a broad variety of topics. However, data on communication with children, siblings, and other family members was scarce and of poor quality. PRACTICE IMPLICATIONS: More research on SPPC program efficacy is needed from the perspective of the ill child, as well as about barriers to end-of-life discussions and the specific aspects of SPPC programs responsible for improving outcomes.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pec.2019.02.011" target="_blank" rel="noreferrer noopener">10.1016/j.pec.2019.02.011</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
April 2019 List
Children
Communication
Counseling
Decision-making
Medeiros C
Palliative Care
Patient Education & Counseling
Pediatrics
Specialized pediatric palliative care program
Streuli JC
Trenholm M
Widger K
Zuniga-Villanueva G
-
Dublin Core
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Title
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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
2032 SE2 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/13674935211026113" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935211026113</a>
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Title
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Self-reported experiences of siblings of children with life-threatening conditions: A scoping review
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Sibling; critical illness; scoping review Adaptation Psychological; Child; Family; Family Health; Humans; Self Report; Siblings psychology
Creator
An entity primarily responsible for making the resource
Tay J; Widger K; Stremler R
Description
An account of the resource
Sibling relationships are one of the most long-lasting and influential relationships in a human?s life. Living with a child who has a life-threatening condition changes healthy siblings? experience. This scoping review summarized and mapped research examining healthy siblings? experience of living with a child with a life-threatening condition to identify knowledge gaps and provide direction for future research. Studies were identified through five electronic databases. Of the 34 included studies, 17 used qualitative methods, four gathered data longitudinally and 24 focused on children with cancer. Four broad themes of sibling experience were identified across studies: family functioning, psychological well-being, social well-being, and coping. Siblings experienced challenges and difficulties over the course of the child?s illness. Future research should incorporate longitudinal designs to better understand the trajectory of siblings? experiences and focus on a wider variety of life-threatening conditions.
Identifier
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<a href="http://doi.org/10.1177/13674935211026113" target="_blank" rel="noreferrer noopener">10.1177/13674935211026113</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
2032 SE2 - Parent Perspectives
Child
Critical Illness
Family
Family Health
Humans
Journal Of Child Health Care
scoping review Adaptation Psychological
Self Report
Sibling
Siblings psychology
Stremler R
Tay J
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.
Text
Any textual data included in the document
<a href="http://midnurse.umsha.ac.ir/uploads/Pediatric_Palliative_Care_Global_Perspectives.pdf" target="_blank" rel="noreferrer">http://midnurse.umsha.ac.ir/uploads/Pediatric_Palliative_Care_Global_Perspectives.pdf</a>
Dublin Core
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Title
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Pediatric palliative care in Canada
Creator
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Widger K, Cadell S, Davies B, Siden H, Steele R
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Description
An account of the resource
In Knapp, Madden & Fowler-Kerry (Eds.) Pediatric Palliative Care: Global Perspectives. Springer Publishing, 301-321.
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Source
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In Knapp, Madden & Fowler-Kerry (Eds.) Pediatric Palliative Care: Global Perspectives. Springer Publishing, 301-321.
Publisher
An entity responsible for making the resource available
Springer Publishing
2012
Cadell S
Davies B
Siden H
Steele R
Widger K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
n/a
URL Address
<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403282/" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403282/</a>
Dublin Core
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Title
A name given to the resource
Enhancing the quality of palliative care for children with cancer: A nation-wide train-the-trainer educational initiative
Publisher
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Paediatrics & Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Creator
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Widger K; Bouffet E; Friedrichsdorf S; Greenberg M; Husain A; Liben S; Pole JD; Siden H; Whitlock J; Wolfe J; Rapoport A
Description
An account of the resource
It is now widely endorsed that palliative care (PC) principles should be integrated into the routine care of all children diagnosed with cancer, not only those at end of life (1). However, paediatric health professionals report receiving little training in PC (2), and bereaved parents continue to report suboptimal care throughout the disease course (3,4). It is crucial that all health professionals caring for children with cancer receive comprehensive education about evidence-based PC and support to implement new knowledge. To achieve these goals, we will implement a national ‘roll-out’ of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a ‘train-the-trainer’ model.
Identifier
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<a href="https://doi.org/10.1093/pch/20.3.157" target="_blank" rel="noreferrer">10.1093/pch/20.3.157</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2015
Bouffet E
Friedrichsdorf S
Greenberg M
Husain A
Liben S
Paediatrics & Child Health
Pole JD
Rapoport A
Siden H
Whitlock J
Widger K
Wolfe J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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
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<a href="http://doi.org/10.1186/s12887-023-04186-9%5C">10.1186/s12887-023-04186-9\</a>"
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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
-
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June 2023 List
Text
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June 2022 List
URL Address
<a href="https://www.cmajopen.ca/content/11/2/E298">https://www.cmajopen.ca/content/11/2/E298</a>
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Title
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Location of death among children with life-threatening conditions: a national population-based observational study using the Canadian Vital Statistics Database (2008-2014)
Publisher
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CMAJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Humans; Child; Retrospective Studies; Infant Newborn; Hospital Mortality; Ontario; Palliative Care; Hospitalization; Only Child
Creator
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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.
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<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
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PedPalASCNet Member Publications
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A collection of relevant articles published by one or more of PedPalASCNet's members
Text
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n/a
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Title
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Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study.
Publisher
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Cmaj Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
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Widger K; Davies D; Adam R; Vadeboncoeur C; Liben S; Amrita S; Stenekes S; Claude C; Daoust L; Gregoire Marie-Claude; Robertson M; Hodgson-Viden H; Laflamme J; Siden H
Description
An account of the resource
BACKGROUND: Pediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized pediatric palliative care in 2012 and the children who received it and to estimate the proportion of children who might benefit that received specialized care. METHODS: A cross-sectional descriptive design was used. Specialized pediatric palliative care programs were included in the study if they offered multidisciplinary consulting pediatric palliative care services to a wide range of children and served all populations of children with life-threatening illness regardless of diagnosis. Investigators in programs that had taken part in a prior study were invited to participate. New programs that met the inclusion criteria were identified through snowball sampling within pediatric palliative care networks. Program data were obtained via surveys with coinvestigators, and health record reviews were used to obtain information about the children who received care through the programs. RESULTS: All 13 programs identified, including 3 with a free-standing hospice, agreed to take part in the study. Of the 1401 children who received care, 508 (36.2%) were under 1 year of age, and 504 (36.0%) had a congenital illness or condition originating in the perinatal period. Of the 431 children who died in 2012, 105 (24.4%) died in a critical care setting. Programs with a hospice provided care to 517 children (36.9%). Children in this group tended to be older, more often had a neurologic illness and received care for a longer time than those who received care from programs without a hospice. Overall, 18.6% (95% confidence interval 17.1%-20.3%) of deceased children who might have benefitted from specialized pediatric palliative care based on diagnosis received such care, with 110 (25.2%) receiving care for less than 8 days. INTERPRETATION: Program growth and changes in patients' demographic and clinical characteristics indicate improved reach of programs. However, barriers remain that prevent most children with life-threatening conditions from receiving specialized pediatric palliative care services.
Identifier
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<a href="http://doi.org/10.9778/cmajo.20160054" target="_blank" rel="noreferrer">http://doi.org/10.9778/cmajo.20160054</a>
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2016
Adam R
Amrita S
Claude C
Cmaj Open
Daoust L
Davies D
Gregoire Marie-Claude
Hodgson-Viden H
Laflamme J
Liben S
Robertson M
Siden H
Stenekes S
Vadeboncoeur C
Widger K
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
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A collection of relevant articles published by one or more of PedPalASCNet's members
Text
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Citation List Month
December 2016 List
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Title
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Not There Yet: Pediatric Palliative Care In Canada 2002 – 2012
Publisher
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Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
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Widger K; Davies D; Dauost L; Liben S; Rapoport A; Gregoire MC; Vadeboncoeur C; Stenekes S; Cyr C; Sarpal A; Roy H; Hodgson-Viden H; Robertson M; Siden H
Description
An account of the resource
Objectives: As a follow-up to a study conducted in 2002,
our objective was to obtain an accurate description of
programs that provided specialized pediatric palliative
care (PPC) in 2012 and the children who received it;
explore changes in the programs and care provided
since 2002; and determine the current proportion of
children who receive care through the programs.
Methods: Collaborators from 13 PPC programs provided
information about program structure and staffing,
and the demographics, processes, and outcomes
of care for the children who received care during
2012. Data were compared with results of a similar
study from 2002.
Results: Between 2002 and 2012 the number of PPC
programs in Canada increased from 8 to 13 and the
number of children who received care through these
programs more than quadrupled from 317 to 1401.
However, the number of core staff across all programs
increased by only two and a half times from 13.6 Full
Time Equivalents in 2002 to 33.8 in 2012. Over the
10 year period, higher proportions of children who
received care in 2012 were less than 1 year of age,
(36.3% vs. 24.0%, p LT 0.01), had congenital conditions
or conditions originating in the perinatal period
(36.0% vs. 22.1%, p LT 0.01), and died in a neonatal
or pediatric intensive care setting (24.4% vs. 12.3%, p
LT 0.01). The proportion of children who might
benefit that actually received specialized PPC increased
from 5.0 percent in 2002 to 18.6 percent in 2012.
Conclusions: Program growth and changes in child
demographics indicate improved reach of the programs
over time. However, remaining barriers prevent
the majority of children from receiving specialized
PPC services in a timely manner. Exploration of
changes over time provides information to clinicians,
and policy and decision makers to guide further program
development in Canada and internationally.
Identifier
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DOI: http://dx.doi.org/10.1016/j.jpainsymman.2016.10.057
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Claude Cyr
Davies D
December 2016 List
Gregoire Marie-Claude
Heather Hodgson-Viden
Helene Roy
Journal of Pain and Symptom Management
Liben S
Lysanne Dauost
Rapoport A
Robertson M
Sarpal A
Siden H
Simone Stenekes
Vadeboncoeur C
Widger K
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1001/archpedi.161.6.597" target="_blank" rel="noreferrer">http://doi.org/10.1001/archpedi.161.6.597</a>
Dublin Core
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Title
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Pediatric patients receiving palliative care in Canada: results of a multicenter review
Publisher
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Archives Of Pediatrics & Adolescent Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Child; Cross-Sectional Studies; Humans; Canada; Preschool; infant; Congenital Abnormalities/mortality; Neoplasms/mortality; Nervous System Diseases/mortality; Palliative Care/utilization; retrospective studies
Creator
An entity primarily responsible for making the resource
Widger K; Davies D; Drouin DJ; Beaune L; Daoust L; Farran RP; Humbert N; Nalewajek F; Rattray M; Rugg M; Bishop M
Description
An account of the resource
OBJECTIVES: To describe the patients who received care from the 8 dedicated pediatric palliative care programs in Canada in 2002 and to estimate the number of children who may have benefited but did not receive services from these programs. DESIGN: Retrospective review of medical records combined with a survey of each program. SETTING: Seven pediatric palliative care programs based in tertiary care settings and 1 freestanding children's hospice. PARTICIPANTS: The programs cared for 317 children during 2002, of whom 123 died during that year. An additional 32 children died by the end of 2003. MAIN EXPOSURE: Pediatric palliative care program. RESULTS: Nearly half (48.6%) of the patients were younger than 5 years, and almost half of these were younger than 1 year. Primary diagnoses were disorders of the nervous system (39.1%), malignancies (22.1%), and conditions arising in the perinatal period or congenital anomalies (22.1%). Most of the children (43.9%) died at home, with those centers reporting more comprehensive home care services having the highest percentage of home deaths. From a national perspective, between 5% and 12% of the children who could benefit from palliative care received services from 1 of these programs. CONCLUSIONS: Pediatric palliative care programs in Canada care for a diverse population of patients with a wide range of age and disease conditions. Only a small percentage of children who die, however, receive services from these dedicated programs.
2007
Identifier
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<a href="http://doi.org/10.1001/archpedi.161.6.597" target="_blank" rel="noreferrer">10.1001/archpedi.161.6.597</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2007
Archives Of Pediatrics & Adolescent Medicine
Backlog
Beaune L
Bishop M
Canada
Child
Congenital Abnormalities/mortality
Cross-sectional Studies
Daoust L
Davies D
Drouin DJ
Farran RP
Humans
Humbert N
Infant
Journal Article
Nalewajek F
Neoplasms/mortality
Nervous System Diseases/mortality
Palliative Care/utilization
Preschool
Rattray M
Retrospective Studies
Rugg M
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
November 2016 List
Dublin Core
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Title
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Protocol: Evaluating The Impact Of A Nation-wide Train-the-trainer Educational Initiative To Enhance The Quality Of Palliative Care For Children With Cancer
Publisher
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Bmc Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adolescent; Canada; Child; Child Preschool; Curriculum/standards; Health Personnel/education; Humans; Neoplasms/therapy; Palliative Care/methods; Palliative Care/standards; Pediatrics/methods; Program Evaluation; Quality Of Life/psychology; Teaching/standards
Pediatrics; Palliative Care; Cancer Quality Care; Education Knowledge Translation
Creator
An entity primarily responsible for making the resource
Widger K; Friedrichsdorf SJ; Wolfe J; Liben S; Pole JD; Bouffet E; Greenberg M; Husain A; Siden H; Whitlock JA; Rapoport A
Description
An account of the resource
Background
There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a ‘Train-the-Trainer’ model.
Methods/design
In this study we are using a pre- post-test design and an integrated knowledge translation approach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of health professionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care. The quality of palliative care will be assessed using data from three sources: a) parent and child surveys about symptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parent surveys about end-of-life and bereavement care. After being trained in EPEC®-Pediatrics, ‘Master Facilitators’ will train ‘Regional Teams’ affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three to five health professionals representing oncology, palliative care, and the community. Each team member will complete online modules and attend one of two face-to-face conferences, where they will receive training and materials to teach the EPEC®-Pediatrics curriculum to ‘End-Users’ in their region. Regional Teams will also choose a Tailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project in their region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars with other teams.
Discussion
Through this study we aim to raise the level of pediatric palliative care education amongst health care professionals in Canada. Our study will be a significant step forward in evaluation of the impact of EPEC®-Pediatrics both on dissemination outcomes and on care quality at a national level. Based on the anticipated success of our project we hope to expand the EPEC®-Pediatrics roll-out to health professionals who care for children with non-oncological life-threatening conditions.
Identifier
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DOI: 10.1186/s12904-016-0085-8
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Adolescent
BMC Palliative Care
Bouffet E
Canada
Cancer Quality Care
Child
Child Preschool
Curriculum/standards
Education Knowledge Translation
Friedrichsdorf SJ
Greenberg M
Health Personnel/education
Humans
Husain A
Liben S
Neoplasms/therapy
November 2016 List
Palliative Care
Palliative Care/methods
Palliative Care/standards
Pediatrics
Pediatrics/methods
Pole JD
Program Evaluation
Quality Of Life/psychology
Rapoport A
Siden H
Teaching/standards
Whitlock JA
Widger K
Wolfe J
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2017 List
URL Address
<a class="aap-doi-text" href="https://doi.org/10.1542/peds.2016-2956" target="_blank" rel="noreferrer">https://doi.org/10.1542/peds.2016-2956</a>
Dublin Core
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Title
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Children's End-of-life Health Care Use And Cost
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Cause Of Death; Child; Health Care Costs; Only Child; Terminal Care
Creator
An entity primarily responsible for making the resource
Widger K; Seow H; Rapoport A; Chalifoux M; Tanuseputro P
Description
An account of the resource
BACKGROUND AND OBJECTIVES: Heath care use and cost for children at the end of life is not well documented across the multiple sectors where children receive care. The study objective was to examine demographics, location, cause of death, and health care use and costs over the last year of life for children aged 1 month to 19 years who died in Ontario, Canada. METHODS: We conducted a population-based retrospective cohort study using administrative databases to determine the characteristics of and health care costs by age group and cause of death over a 3-year period from 2010 to 2013. RESULTS: In our cohort of 1620 children, 41.6% died of a chronic disease with wide variation across age groups. The mean health care cost over the last year of life was $78 332 (Canadian) with a median of $18 450, reflecting the impact of high-cost decedents. The mean costs for children with chronic or perinatal/congenital illnesses nearly tripled over the last 4 months of life. The majority of costs (67.0%) were incurred in acute care settings, with 88.0% of children with a perinatal/congenital illness and 79.7% with a chronic illness dying in acute care. Only 33.4% of children received home care in the last year of life. CONCLUSIONS: Children in Ontario receive the majority of their end-of-life care in acute care settings at a high cost to the health care system. Initiatives to optimize care should focus on early discussion of the goals of care and assessment of whether the care provided fits with these goals.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1542/peds.2016-2956" target="_blank" rel="noreferrer">10.1542/peds.2016-2956</a>
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2017
Cause Of Death
Chalifoux M
Child
Health Care Costs
May 2017 List
Only Child
Pediatrics
Rapoport A
Seow H
Tanuseputro P
Terminal Care
Widger K
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1097/njh.0b013e3181aada87" target="_blank" rel="noreferrer">http://doi.org/10.1097/njh.0b013e3181aada87</a>
Dublin Core
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Title
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Exploring the Supportive Care Model as a framework for pediatric palliative care
Publisher
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Journal Of Hospice & Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Creator
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Widger K; Steele R; Davies B; Oberle K
Identifier
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<a href="http://doi.org/10.1097/njh.0b013e3181aada87" target="_blank" rel="noreferrer">10.1097/njh.0b013e3181aada87</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2009
2009
Backlog
Davies B
Journal Article
Journal Of Hospice & Palliative Nursing
Oberle K
Steele R
Widger K
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1186/1472-684X-14-1" target="_blank" rel="noreferrer">http://doi.org/10.1186/1472-684X-14-1</a>
Dublin Core
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Title
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Initial development and psychometric testing of an instrument to measure the quality of children's end-of-life care
Publisher
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Bmc Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Creator
An entity primarily responsible for making the resource
Widger K; Tourangeau AE; Steele R; Streiner DL
Description
An account of the resource
BACKGROUND: The field of pediatric palliative care is hindered by the lack of a well-defined, reliable, and valid method for measuring the quality of end-of-life care. METHODS: The study purpose was to develop and test an instrument to measure mothers' perspectives on the quality of care received before, at the time of, and following a child's death. In Phase 1, key components of quality end-of-life care for children were synthesized through a comprehensive review of research literature. These key components were validated in Phase 2 and then extended through focus groups with bereaved parents. In Phase 3, items were developed to assess structures, processes, and outcomes of quality end-of-life care then tested for content and face validity with health professionals. Cognitive testing was conducted through interviews with bereaved parents. In Phase 4, bereaved mothers were recruited through 10 children's hospitals/hospices in Canada to complete the instrument, and psychometric testing was conducted. RESULTS: Following review of 67 manuscripts and 3 focus groups with 10 parents, 141 items were initially developed. The overall content validity index for these items was 0.84 as rated by 7 health professionals. Based on feedback from health professionals and cognitive testing with 6 parents, a 144-item instrument was finalized for further testing. In Phase 4, 128 mothers completed the instrument, 31 of whom completed it twice. Test-retest reliability, internal consistency, and construct validity were demonstrated for six subscales: Connect With Families, Involve Parents, Share Information With Parents, Share Information Among Health Professionals, Support Parents, and Provide Care at Death. Additional items with content validity were grouped in four domains: Support the Child, Support Siblings, Provide Bereavement Follow-up, and Structures of Care. Forty-eight items were deleted through psychometric testing, leaving a 95-item instrument. CONCLUSIONS: There is good initial evidence for the reliability and validity of this new quality of end-of-life care instrument as a mechanism for evaluative feedback to health professionals, health systems, and policy makers to improve children's end-of-life care.
2015
Identifier
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<a href="http://doi.org/10.1186/1472-684X-14-1" target="_blank" rel="noreferrer">10.1186/1472-684X-14-1</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
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Journal Article
2015
Backlog
BMC Palliative Care
Journal Article
Steele R
Streiner DL
Tourangeau AE
Widger K
-
Dublin Core
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Title
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PedPalASCNet Member Publications
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A collection of relevant articles published by one or more of PedPalASCNet's members
Text
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Citation List Month
December 2017 List
URL Address
<a href="https://doi.org/10.1089/jpm.2017.0028" target="_blank" rel="noreferrer">https://doi.org/10.1089/jpm.2017.0028</a>
Dublin Core
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Title
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The Validity of Using Health Administrative Data To Identify the Involvement of Specialized Pediatric Palliative Care Teams in Children with Cancer in Ontario, Canada.
Publisher
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Journal Of Palliative Medicine
Date
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2017
Creator
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Widger K; Vadeboncoeur C; Zelcer S; Liu Y; Kassam A; Sutradhar R; Rapoport A; Nelson K; Wolfe J; Earle C; Pole JD; Gupta S
Description
An account of the resource
BACKGROUND: Population-based research to identify underserviced populations and the impact of palliative care (PC) is limited as the validity of such data to identify PC services is largely unknown. OBJECTIVE: To determine the validity of using such data to identify the involvement of specialized pediatric PC teams among children with cancer. DESIGN: Retrospective cohort. SUBJECTS: Ontario children with cancer who died between 2000 and 2012, received care through a pediatric institution with a specialized PC team and a clinical PC database. MEASUREMENTS: All patients in the clinical databases were linked to population-based health services administrative databases. Six algorithms were created to indicate the use of formal pediatric PC teams based on the record type (physician billings vs. inpatient records vs. both) and number of eligible codes required (>/=1 vs. >/=2). Each was validated against the pediatric PC clinical databases. RESULTS: The cohort comprised 572 children; 243 were in the clinical databases. Algorithms using only inpatient records had high specificity (80%-95%) but poor sensitivity (21%-56%). Including physician billings increased sensitivity but lowered specificity. The algorithm with overall best performance required >/=2 physician billing or inpatient diagnosis codes indicating PC [sensitivity 0.79 (95% CI 0.73-0.84), specificity 0.58 (95% CI 0.53-0.64)]. CONCLUSIONS: Health administrative data identifies involvement of specialized pediatric PC teams with good sensitivity but low specificity. Studies using such data alone to compare patients receiving and not receiving specialized pediatric PC are at significant risk of misclassification and potential bias. Population-based PC databases should be established to conduct rigorous population-based PC research.
Identifier
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<a href="https://doi.org/10.1089/jpm.2017.0028" target="_blank" rel="noreferrer">10.1089/jpm.2017.0028</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
December 2017 List
Earle C
Gupta S
Journal of Palliative Medicine
Kassam A
Liu Y
Nelson K
Pole JD
Rapoport A
Sutradhar R
Vadeboncoeur C
Widger K
Wolfe J
Zelcer S
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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September 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2017.0532</a>
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National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on Pediatric Palliative Care
Publisher
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Journal of Palliative Medicine
Date
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2018
Creator
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Widger K; Wolfe J; Friedrichsdorf S; Pole JD; Brennenstuhl S; Liben S; Greenberg M; Bouffet E; Siden H; Husain A; Whitlock JA; Leyden M; Rapoport A
Description
An account of the resource
Abstract Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC?-Pediatrics) curriculum on the following: (1) knowledge dissemination; (2) health professionals' knowledge; (3) practice change; and (4) quality of PPC. Design: An integrated knowledge translation approach was used with pre-/posttest evaluation of care quality. Setting/Subjects/Measurements: Regional Teams of 3?6 health professionals based at 15 pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who taught the curriculum to health professionals (learners) and implemented quality improvement (QI) projects. Trainers recorded the number of learners at each education session and progress on QI goals. Learners completed knowledge surveys. Care quality was assessed through surveys with a cross-sectional sample of children with cancer and their parents about symptoms, quality of life, and care quality plus reviews of deceased patients' health records. Results: Seventy-two Trainers taught 3475 learners; the majority (96.7%) agreed that their PPC knowledge improved. In addition, 10/15 sites achieved practice change QI goals. The only improvements in care quality were an increased number of days from referral to PPC teams until death by a factor of 1.54 (95% confidence interval [CI]?=?1.17?2.03) and from first documentation of advance care planning until death by a factor of 1.50 (95% CI?=?1.06?2.11), after adjusting for background variables. Conclusion: While improvements in care quality were only seen in two areas, our approach was highly effective in achieving knowledge dissemination, knowledge improvement, and practice change goals.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0532</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
2018
Bouffet E
Brennenstuhl S
Friedrichsdorf S
Greenberg M
Husain A
Journal of Palliative Medicine
Leyden M
Liben S
October 2018 List
Pole JD
Rapoport A
September 2018 List
Siden H
Whitlock JA
Widger K
Wolfe J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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cancer palliative therapy;childhood cancer;medical education;Pediatrics;Advance care planning;article;Canada;Child;clinical practice;health care quality;health practitioner;Human;professional knowledge;quality of life;self care;tertiary care center;total quality management
Creator
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