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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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October 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
October 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.011" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.08.011</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
Challenges and Priorities for Pediatric Palliative Care Research in the United States and Similar Practice Settings: Report from a Pediatric Palliative Care Research Network Workshop
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
2019
Subject
The topic of the resource
palliative care; decision-making; funding; pediatric; family; infrastructure; methodology; research; symptoms; training
Creator
An entity primarily responsible for making the resource
Feudtner C; Rosenberg A R; Boss R D; Wiener L; Lyon M E; Hinds P S; Bluebond-Langner M; Wolfe J
Description
An account of the resource
CONTEXT: In order to dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the United States and similar practice settings, the field needs to better understand the challenges and opportunities for rigorous scholarship. OBJECTIVES: The Pediatric Palliative Care Research Network conducted a workshop to clarify challenges and identify key priorities. METHODS: The workshop focused on PPC research topics and methods, including: outcomes measurement, qualitative inquiry, analyses of "big data," prospective collection of research data, case series and cohort studies, and intervention trials, with synthesizing summary and follow-up discussions. All attendees reviewed and approved the final report. RESULTS: Five common challenges were identified: patient diversity and small population size; interdependencies and dynamic interactions between child, family members, and disease processes over time; outcomes and measurement; workforce and infrastructure limitations; and presumed burden of PPC research upon participants. Seven priorities emerged: bolster training and development of PPC investigators; develop core resources; advance symptom measurement (and measurements of other exposures and outcomes); improve symptom management and quality of life interventions; improve communication, elicitation of goals of care, and decision-making; understand family impact and facilitate or improve family adaptation and coping; and analyze and improve systems of care, policy, and education. CONCLUSION: These challenges and priorities identify key research areas that can guide individual investigators and research funders to advance the field.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.011" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.08.011</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).
2019
Bluebond-Langner M
Boss R D
Decision-making
Family
Feudtner C
Funding
Hinds P S
infrastructure
Journal of Pain and Symptom Management
Lyon M E
Methodology
October 2019 List
Palliative Care
Pediatric
Research
Rosenberg A R
Symptoms
Training
Wiener L
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
August 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.06.005" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.06.005</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Pediatric Chronic Critical Illness: Training teams to address the communication challenges of patients with repeated and prolonged hospitalizations
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Chronic critical illness; Communication; medical education
Creator
An entity primarily responsible for making the resource
Boss R D; Hirschfeld R S; Silvana B; Emily J; Arnold R M
Description
An account of the resource
CONTEXT: Children with chronic critical illness (CCI) have repeated and prolonged hospitalizations. Discrete communication challenges characterize their inpatient care. OBJECTIVES: Develop, implement and evaluate a communication training for inpatient clinicians managing pediatric CCI. METHODS: A one-day communication training for interdisciplinary clinicians, incorporating didactic sessions and simulated family and interdisciplinary team meetings. RESULTS: Learners had an average of 11 years' clinical experience. 34% lacked prior communication training relevant to pediatric CCI. Mean baseline competence across communication skills was 2.6 (range 2.4-3.2), corresponding to less than "somewhat prepared"; after the training this increased to a mean of 4.0 (range 3.5-4.5), corresponding to "well prepared." Skills with greatest improvement included conducting a family meeting, delivering bad news, discussing stopping intensive care, and end of life communication. After 1 month, perceived competence was sustained for 7/10 skills; for remaining skills, perceived competence scores decreased by 0.1-0.2. 100% of learners would recommend the training to colleagues; 89% advocated it for all clinicians caring for children with CCI. CONCLUSION: Interdisciplinary communication training regarding long stay patients is feasible and valued by novice and seasoned clinicians. The novel integration of intra-team communication skills alongside team-family skills reflects the reality that the care of children with CCI challenges clinicians to communicate well with each other and with families. Teaching interdisciplinary teams to share communication skills has the potential to overcome reported limitations of existing inpatient discussions, which can be dominated by one or two physicians and lack contributions from diverse team members.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2020.06.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.06.005</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Arnold R M
August 2020 List
Boss R D
Chronic critical illness
Communication
Emily J
Hirschfeld R S
Journal of Pain and Symptom Management
Medical Education
Silvana 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
A name given to the resource
2020 Oncology 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
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.11.022" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.11.022</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Defining the Boundaries of Palliative Care in Pediatric Oncology
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
child; human; palliative therapy; controlled study; female; major clinical study; male; article; childhood cancer; terminal care; quality of life; interview; comfort; cancer patient; content analysis; skill; mental health; nurse practitioner; genetic transcription; pediatric oncologist; standardization
Creator
An entity primarily responsible for making the resource
Cuviello A; Raisanen J C; Donohue P K; Wiener L; Boss R D
Description
An account of the resource
Context: Although palliative care (PC) continues to be integrated into pediatric oncological care, only a minority of patients with cancer receive a formal PC consult.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.11.022" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.11.022</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Article
Boss R D
Cancer Patient
Child
Childhood Cancer
Comfort
Content Analysis
Controlled Study
Cuviello A
Donohue P K
Female
genetic transcription
Human
Interview
Journal of Pain and Symptom Management
Major Clinical Study
Male
Mental Health
Nurse Practitioner
Oncology 2020 List
Palliative Therapy
pediatric oncologist
Quality Of Life
Raisanen J C
Skill
standardization
Terminal Care
Wiener L
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2020 Oncology 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
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.07.008" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.07.008</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Initiating Palliative Care Referrals in Pediatric Oncology
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
palliative care; quality of life; symptom management; pediatric oncology; screening tool; trigger
Creator
An entity primarily responsible for making the resource
Cuviello A; Raisanen J C; Donohue P K; Wiener L; Boss R D
Description
An account of the resource
CONTEXT: Early palliative care (PC) has been shown to improve the quality of life of children with cancer, yet referral practices by pediatric oncology providers remains inconsistent and few patients receive a formal PC consult. OBJECTIVE(S): We sought to describe patient characteristics used by oncologists for PC referral and identify ways to improve PC integration into the care for children with cancer. METHOD(S): This mixed-methods study used semi-structured audiotaped interviews to explore the patient or disease characteristics used by pediatric oncology providers to trigger PC referral. Conventional content analysis was applied to interview transcripts. RESULT(S): 77 participants with diverse experience were interviewed. Over 75% of participants reported that PC was consulted "too late" and cited communication and systems issues as the top barriers. A majority of participants (85%) stated that a screening tool would be helpful to standardize referral practices to PC. Characteristics such as poor prognosis (88%), symptom management (86%), comorbidities (65%), and psychosocial needs (65%) were commonly reported triggers that should initiate PC consultation. However, when presented with case scenarios that included these characteristics, participants did not consistently identify the PC triggers. Nearly 50% of participants stated they had received some formalized PC training, however only one third of these participants noted completing a PC rotation. CONCLUSION(S): Our findings suggest that pediatric oncologists are committed to improving the integration of PC for their patients and that standardization of referral practices, through the use of a screening tool, would be of benefit. Additional PC education might reinforce pediatric oncologists' recognition of palliative care triggers. Copyright © 2020. Published by Elsevier Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2020.07.008" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.07.008</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Boss R D
Cuviello A
Donohue P K
Journal of Pain and Symptom Management
Oncology 2020 List
Palliative Care
Pediatric Oncology
Quality Of Life
Raisanen J C
Screening tool
Symptom Management
trigger
Wiener L