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40
70
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Title
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March 2021 List
Text
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March 2021 List
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.01.007" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.01.007</a>
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Prioritization of Pediatric Palliative Care Field-Advancement Activities in the United States: Results of a National Survey
Publisher
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Journal of Pain and Symptom Management
Date
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2021
Subject
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pediatric; palliative care; funding; curriculum; quality of health care; financing
Creator
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Feudtner C; Faerber JA; Rosenberg AR; Kobler K; Baker JN; Bowman BA; Wolfe J; Friebert S
Description
An account of the resource
BACKGROUND: The field of pediatric palliative care (PPC) continues to encounter challenges and opportunities to improving access to high-quality PPC services. In early 2019, a workshop identified eleven potential "next step" actions, and subsequently a national survey-based poll of members of the PPC community was conducted to prioritize these potential actions in terms of their "actionable importance." METHODS: Invitations to the survey were distributed in October 2019 to interdisciplinary PPC health care professionals via email to two major listservs, one hosted by the Section of Hospice and Palliative Medicine of the American Academy of Pediatrics, the other by the Center to Advance Palliative Care. Respondents rated the "actionable importance" of items relative to each other via a discrete choice experiment. Median importance scores are reported for each item. RESULTS: 177 individuals responded to the survey. The majority (62.2%) were physicians, with nurses (16.4%), advanced practice nurses (7.9%), and social workers (7.3%) being the other most common responders. The top 5 potential actions, in descending rank order, were: Determine what parents value regarding PPC (median score of 17.8, out of a total score of all items of 100); Define and disseminate core primary PPC curriculum (median, 15.3); Develop PPC national representation strategy and tactics (median, 12.3); Create PPC-specific program development toolkit (median, 10.9); and, Analyze payment and financing ratios (median, 9.6). CONCLUSIONS: Those seeking to advance the field of PPC should take into account the findings from this study, which suggest that certain actions are more likely to have a beneficial impact on moving the field forward.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.01.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.01.007</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Baker JN
Bowman BA
Curriculum
Faerber JA
Feudtner C
Financing
Friebert S
Funding
Journal of Pain and Symptom Management
Kobler K
March 2021 List
Palliative Care
Pediatric
Quality Of Health Care
Rosenberg AR
Wolfe J
-
Dublin Core
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Title
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January 2022 List
Text
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January 2022 List
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<a href="http://doi.org/10.2196/26777" target="_blank" rel="noreferrer noopener">http://doi.org/10.2196/26777</a>
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Natural Language Processing and Machine Learning Methods to Characterize Unstructured Patient-Reported Outcomes: Validation Study
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Journal of Medical Internet Research
Date
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2021
Subject
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machine learning; pediatric oncology; Patient reported outcomes; natural language processing; PROs
Creator
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Lu Z; Sim J; Wang JX; Forrest CB; Krull KR; Srivastava D; Hudson MM; Robison LL; Baker JN; Huang I-C
Description
An account of the resource
Background: Assessing patient-reported outcomes (PROs) through interviews or conversations during clinical encounters provides insightful information about survivorship. Objective: This study aims to test the validity of natural language processing (NLP) and machine learning (ML) algorithms in identifying different attributes of pain interference and fatigue symptoms experienced by child and adolescent survivors of cancer versus the judgment by PRO content experts as the gold standard to validate NLP/ML algorithms. Methods: This cross-sectional study focused on child and adolescent survivors of cancer, aged 8 to 17 years, and caregivers, from whom 391 meaning units in the pain interference domain and 423 in the fatigue domain were generated for analyses. Data were collected from the After Completion of Therapy Clinic at St. Jude Children’s Research Hospital. Experienced pain interference and fatigue symptoms were reported through in-depth interviews. After verbatim transcription, analyzable sentences (ie, meaning units) were semantically labeled by 2 content experts for each attribute (physical, cognitive, social, or unclassified). Two NLP/ML methods were used to extract and validate the semantic features: bidirectional encoder representations from transformers (BERT) and Word2vec plus one of the ML methods, the support vector machine or extreme gradient boosting. Receiver operating characteristic and precision-recall curves were used to evaluate the accuracy and validity of the NLP/ML methods. Results: Compared with Word2vec/support vector machine and Word2vec/extreme gradient boosting, BERT demonstrated higher accuracy in both symptom domains, with 0.931 (95% CI 0.905-0.957) and 0.916 (95% CI 0.887-0.941) for problems with cognitive and social attributes on pain interference, respectively, and 0.929 (95% CI 0.903-0.953) and 0.917 (95% CI 0.891-0.943) for problems with cognitive and social attributes on fatigue, respectively. In addition, BERT yielded superior areas under the receiver operating characteristic curve for cognitive attributes on pain interference and fatigue domains (0.923, 95% CI 0.879-0.997; 0.948, 95% CI 0.922-0.979) and superior areas under the precision-recall curve for cognitive attributes on pain interference and fatigue domains (0.818, 95% CI 0.735-0.917; 0.855, 95% CI 0.791-0.930). Conclusions: The BERT method performed better than the other methods. As an alternative to using standard PRO surveys, collecting unstructured PROs via interviews or conversations during clinical encounters and applying NLP/ML methods can facilitate PRO assessment in child and adolescent cancer survivors.
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<a href="http://doi.org/10.2196/26777" target="_blank" rel="noreferrer noopener">10.2196/26777</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
Forrest CB
Huang I-C
Hudson MM
January 2022 List
Journal Of Medical Internet Research
Krull KR
Lu Z
machine learning
natural language processing
Patient Reported Outcomes
Pediatric Oncology
PROs
Robison LL
Sim J
Srivastava D
Wang JX
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Dublin Core
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Title
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April 2021 List
Text
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April 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-040386" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-040386</a>
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Title
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Grief and Bereavement in Fathers After the Death of a Child: A Systematic Review
Publisher
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Pediatrics
Date
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2021
Subject
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systematic review; hospice and palliative medicine; bereavement; father grief
Creator
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McNeil MJ; Baker JN; Snyder I; Rosenberg AR; Kaye EC
Description
An account of the resource
CONTEXT: The death of a child is devastating, and complicated grief adversely impacts parental physical and psychosocial well-being. Most research currently is centered on bereaved mothers, and the experiences of fathers remains underexplored. OBJECTIVE: We systematically reviewed the literature to characterize the grief and bereavement experiences of fathers after the death of a child. DATA SOURCES: We searched Medline, PsycInfo, Embase, and Cumulative Index to Nursing and Allied Health Literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. STUDY SELECTION: Inclusion criteria encompassed English language articles published between 2007 and 2019 that evaluated the grief and bereavement experiences of fathers after the death of their child. We excluded studies describing paternal bereavement after the death of a child aged older than 21 years, stillbirth, miscarriage, or studies that did not specify age of death. DATA EXTRACTION: Extracted domains included study design, demographics, findings, and quality assessment. RESULTS: We screened 1848 deduplicated titles and abstracts and 139 full articles, yielding 21 articles for inclusion in this analysis. Fathers often avoided discussing their grief with others, returned to work earlier, and used goal-oriented tasks as coping strategies. Intense grief reactions and posttraumatic psychological sequelae diminished over time in mothers yet persisted in fathers. LIMITATIONS: Included studies were primarily descriptive in nature, without ability to ascertain causality. Limited paternal data exists in the literature compared with maternal data. CONCLUSIONS: Despite evolving gender roles, many fathers navigate loss through stoicism, self-isolation, and hard work. For some fathers, these coping mechanisms may be inadequate for navigating grief.
Identifier
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<a href="http://doi.org/10.1542/peds.2020-040386" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-040386</a>
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2021
April 2021 List
Baker JN
Bereavement
Father Grief
hospice and palliative medicine
Kaye EC
McNeil MJ
Pediatrics
Rosenberg AR
Snyder I
Systematic Review
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Title
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July 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.05.019" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.05.019</a>
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Title
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“Still Caring for the Family”: Condolence Expression Training for Pediatric Residents
Publisher
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Journal of Pain and Symptom Management
Date
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2021
Subject
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Pediatrics; Communication; Bereavement; Education; Residency
Creator
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Porter AS; Weaver MS; Snaman JM; Chen L; Zhaohua L; Baker JN; Kaye EC
Description
An account of the resource
Abstract Context: Insufficient communication from the medical team following a child's death may compound parental grief. Pediatric residents care for children who die, yet the landscape of condolence expression education within residency programs has not been studied. Objectives: The objective of this study was to evaluate pediatric residents' levels of experience and comfort with condolence expression and to assess their needs and desires for training in condolence expression. Methods: A cross-sectional, mixed methods survey was developed by palliative care clinicians in collaboration with bereaved parents. In 2020, following pilot testing, an electronic survey measuring resident experience with, comfort with, and training on condolence expression was distributed to 202 third-year pediatric residents across 17 ACGME-accredited programs representing varying sizes and geographic regions. Results: Ten percent of pediatric residents surveyed reported having training on condolence expression. Almost all residents considered condolence expression to be beneficial for bereaved families and most for clinicians, too, yet most had never formally expressed condolences in their roles as physicians: 83.1% had never written a condolence letter, 85% had never made a condolence phone call, and 90.5% had never attended a memorial event. Commonly reported barriers to condolence expression included lack of experience and training, as well as concern about upsetting families. Conclusions: Pediatric residents lack comfort with and training in condolence expression and desire education to address these gaps. These findings should inform development and investigation of educational resources and training opportunities for residents to learn and practice compassionate provision of condolences to grieving families.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.05.019" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.05.019</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
Bereavement
Chen L
Communication
Education
Journal of Pain and Symptom Management
July 2021 List
Kaye EC
Pediatrics
Porter AS
residency
Snaman JM
Weaver MS
Zhaohua 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
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December 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2021 List
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2021.27457" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamanetworkopen.2021.27457</a>
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Title
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Community Hospice Nurses' Perspectives on Needs, Preferences, and Challenges Related to Caring for Children With Serious Illness
Publisher
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JAMA network open
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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challenges; children; hospice; nurse perspectives; serious illness
Creator
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Porter AS; Zalud K; Applegarth J; Woods C; Gattas M; Rutt E; Williams K; Baker JN; Kaye EC
Description
An account of the resource
Importance: Many of the 50 000 children who die annually are eligible for provision of community-based hospice care, yet few hospice organizations offer formal pediatric services. Population-level data demonstrate that hospice nurses lack training, experience, and comfort in caring for children, but their specific educational needs and preferences are poorly understood. Objective: To assess the pediatric-specific training and support needs of hospice nurses caring for children in the community. Design, Setting, and Participants: For this qualitative study, 41 nurses were purposively seletected from a population-level cohort of 551 hospice nurses who completed a previous mixed-methods survey; these 41 nurses participated in semistructured interviews between February and April 2019. Hospice nurses were recruited from all accredited hospice organizations in Tennessee, Mississippi, and Arkansas that offer care to pediatric patients. Content analysis of interview transcripts was conducted. Main Outcomes and Measures: The interview guide probed for topics related to prior pediatric hospice training experiences, desires and preferences for training, and perceived barriers to training. Results: Interviews were conducted with 41 nurses representing different geographic regions and levels of comfort with pediatric hospice provision (as self-reported in the prior survey). Thirty-eight of the nurses were women (92.7%), with a median age of 40-49 years (range, 20-29 to ≥60 years) and median tenure of 5-9 years (range, <1 to ≥20 years) as a hospice nurse. Respondents included 1 American Indian or Alaska Native nurse (2.4%), 1 Black nurse (2.4%), and 39 White nurses (95.1%). Across interviews, most hospice nurses reported feeling uncomfortable caring for children with serious illness, and all nurses used language to express the immediacy behind the need for pediatric-specific training and support. Nurses explained why further training and support are needed and clear preferences for who should provide the education, educational modalities, and specific training topics. Nurses also articulated barriers to training and support opportunities and proposed innovative suggestions for overcoming these challenges. Notably, nurses emphasized the need for connection with experts, a sense of community, and solidarity to support frontline clinicians providing end-of-life care to children in the community. Conclusions and Relevance: In this qualitative study, community hospice nurses expressed an urgent need for improvements in pediatric-specific training opportunities and support, clear preferences for how education should be provided, and recommendations for circumventing barriers to training. These findings are a call to action for the palliative care community to collaborate in rapid implementation of educational programs and networks to systematically support hospice nurses caring for children in the community.
Identifier
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<a href="http://doi.org/10.1001/jamanetworkopen.2021.27457" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2021.27457</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
Applegarth J
Baker JN
challenges
Children
December 2021 List
Gattas M
Hospice
JAMA Network Open
Kaye EC
nurse perspectives
Porter AS
Rutt E
Serious Illness
Williams K
Woods C
Zalud 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 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
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>
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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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
The topic of the resource
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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Special Edition #1 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1007/s00520-021-06047-6" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00520-021-06047-6</a>
Dublin Core
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Title
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Parental views on communication between children and clinicians in pediatric oncology: a qualitative study
Publisher
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Supportive Care in Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Children; Communication; Pediatric oncology; Physician-patient relationship; Psychosocial oncology; Supportive oncology
Creator
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Sisk BA; Schulz GL; Blazin LJ; Baker JN; Mack JW; DuBois JM
Description
An account of the resource
Communication is essential to providing family-centered care in pediatric oncology. Previously, we developed a functional model of communication between parents and clinicians. Prior research has not examined the domains and purposes of communication between children and clinicians. We explored parental perspectives to begin understanding this communication.
Identifier
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<a href="http://doi.org/10.1007/s00520-021-06047-6" target="_blank" rel="noreferrer noopener">10.1007/s00520-021-06047-6</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
2022 Special Edition 1 - Parent Perspectives
Baker JN
Blazin LJ
Children
Communication
DuBois JM
Mack JW
Pediatric Oncology
Physician-patient relationship
psychosocial oncology
Schulz GL
Sisk BA
Supportive Care In Cancer
Supportive oncology
-
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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Special Edition #1 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.3390/children8060472" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children8060472</a>
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Title
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Leveraging Grief: Involving Bereaved Parents in Pediatric Palliative Oncology Program Planning and Development
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
pediatric palliative care; bereaved parents; bereavement care; pediatric oncology bereavement
Creator
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Spraker-Perlman HL; Aglio T; Kaye EC; Levine D; Barnett B; Berry Carter K; McNeil M; Clark L; Baker JN
Description
An account of the resource
As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life. Families developed Eight Priorities, shared within, to improve care for children with a poor chance of survival based on their experience of losing a child to cancer. In this paper, we delineate the top eight PPC needs from a parent perspective to offer multi-layered, individually tailored resources for patients and families. One of these Eight Priorities noted that bereavement care for the remaining family members is vital for healing after the death of a child to promote meaning making and resilience in bereaved families. Here, we outline the creation of a bereaved parent-designed bereavement support program as one example of how we have partnered with parents to fulfill their Eight Priorities for quality care.
Identifier
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<a href="http://doi.org/10.3390/children8060472" target="_blank" rel="noreferrer noopener">10.3390/children8060472</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
2022 Special Edition 1 - Parent Perspectives
Aglio T
Baker JN
Barnett B
Bereaved Parents
Bereavement Care
Berry Carter K
Children
Clark L
Kaye EC
Levine D
McNeil M
pediatric oncology bereavement
Pediatric Palliative Care
Spraker-Perlman HL
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
July 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-029330" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-029330</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 Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT
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
The topic of the resource
advance care planning; Caregiver Attitudes; hospice and palliative medicine; oncology; psychiatry; psychology
Creator
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Thompkins JD; Needle J; Baker JN; Briggs L; Cheng YI; Wang J; Friebert S; Lyon ME
Description
An account of the resource
BACKGROUND AND OBJECTIVES: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effect of family centered pediatric advance care planning intervention for teens with cancer (FACE-TC) advance care planning on families' appraisals of their caregiving, distress, and strain. METHODS: In a randomized clinical trial with adolescents with cancer and their families conducted from July 2016 to April 2019 in 4 tertiary pediatric hospitals, adolescents and family dyads were randomly assigned at a 2:1 intervention/control ratio to either the 3 weekly sessions of FACE-TC (Advance Care Planning Survey; Next Steps: Respecting Choices; Five Wishes) or treatment-as-usual. Only the family member was included in this study. Generalized estimating equations assessed the intervention effect measured by Family Appraisal of Caregiving Questionnaire. RESULTS: Families' (n = 126) mean age was 46 years; 83% were female, and 82% were white. FACE-TC families significantly increased positive caregiving appraisals at 3-months postintervention, compared with those in the control group (β = .35; 95% confidence interval [CI] 0.19 to 0.36; P = .03). No significant differences were found between groups for strain (β = -.14; 95% CI = -0.42 to 0.15; P = .35) or distress (β = -.01; CI = -0.35 to 0.32; P = .93). CONCLUSIONS: Families benefited from participation in FACE-TC, which resulted in positive appraisals of their caregiving for their child with cancer, while not significantly burdening them with distress or strain. Clinicians can be assured of the tolerability of this family-supported model.
Identifier
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<a href="http://doi.org/10.1542/peds.2020-029330" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-029330</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
Advance Care Planning
Baker JN
Briggs L
Caregiver Attitudes
Cheng YI
Friebert S
hospice and palliative medicine
July 2021 List
Lyon ME
Needle J
Oncology
Pediatrics
Psychiatry
Psychology
Thompkins JD
Wang J
-
Text
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URL Address
<a href="http://doi.org/10.1089/jpm.2011.0500" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2011.0500</a>
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Title
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Pediatric palliative sedation therapy with propofol: recommendations based on experience in children with terminal cancer
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
2012
Subject
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Intervention; Interventions; KPM Briefings
Creator
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Anghelescu DL; Hamilton H; Faughnan LG; Johnson LM; Baker JN
Description
An account of the resource
Abstract Background: The use of propofol for palliative sedation of children is not well documented. Objective: Here we describe our experience with the use of propofol palliative sedation therapy (PST) to alleviate intractable end-of-life suffering in three pediatric oncology patients, and propose an algorithm for the selection of such candidates for PST. Patients and Methods: We identified inpatients who had received propofol PST within 20 days of death at our institution between 2003 and 2010. Their medical records were reviewed for indicators of pain, suffering, and sedation from 48 hours before PST to the time of death. We also tabulated consumption of opioids and other symptom management medications, pain scores, and adverse events of propofol, and reviewed clinical notes for descriptors of suffering and/or palliation. Results: Three of 192 (1.6%) inpatients (aged 6-15 years) received propofol PST at the end of life. Consumption of opioids and other supportive medications decreased during PST in two cases. In the third case, pain scores remained high and sedation was the only effective comfort measure. Clinical notes suggested improved comfort and rest in all patients. Propofol infusions were continued until the time of death. Conclusions: Our experience demonstrates that propofol PST is a useful palliative option for pediatric patients experiencing intractable suffering at the end of life. We describe an algorithm that can be used to identify such children who are candidates for PST.
Identifier
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<a href="http://doi.org/10.1089/jpm.2011.0500" target="_blank" rel="noreferrer">10.1089/jpm.2011.0500</a>
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Type
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Journal Article
2012
Anghelescu DL
Backlog
Baker JN
Faughnan LG
Hamilton H
Intervention
Interventions
Johnson LM
Journal Article
Journal of Palliative Medicine
KPM Briefings
-
Text
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1002/pbc.25493" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.25493</a>
<a href="http://dx.doi.org/10.1002/pbc.25493" target="_blank" rel="noreferrer">http://dx.doi.org/10.1002/pbc.25493</a>
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Title
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Patient-controlled analgesia at the end of life at a pediatric oncology institution
Publisher
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Pediatric Blood & Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
opioid analgesics; pain control; Pediatric pain control
Creator
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Anghelescu DL; Snaman JM; Trujillo L; Sykes AD; Yuan Y; Baker JN
Identifier
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<a href="http://doi.org/10.1002/pbc.25493" target="_blank" rel="noreferrer">10.1002/pbc.25493</a>
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Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2015-07
2015
Anghelescu DL
Backlog
Baker JN
Journal Article
opioid analgesics
Pain Control
Pediatric Blood & Cancer
Pediatric Pain Control
Snaman JM
Sykes AD
Trujillo L
Yuan Y
-
Dublin Core
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Title
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June 2022 List
Text
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Citation List Month
June 2022 List
URL Address
<a href="http://doi.org/10.1542/peds.2021-054796" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2021-054796</a>
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Title
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An Intervention in Congruence for End-of-Life Treatment Preference: A Randomized Trial
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Advance Care Planning; Advance Directives; Confidence Intervals; End of Life; Odds Ratio; United States
Creator
An entity primarily responsible for making the resource
Baker JN; Friebert S; Needle J; Jiang J; Wang J; Lyon ME
Description
An account of the resource
BACKGROUND AND OBJECTIVES: There is a gap in family knowledge of their adolescents' end-of-life (EOL) treatment preferences. We tested the efficacy of Family Centered Advance Care Planning for Teens with Cancer (FACE-TC) pediatric advance care planning (to increase congruence in EOL treatment preferences. METHOD(S): Adolescents with cancer/family dyads were randomized into a clinical trial from July 2016 to April 2019 at a 2:1 ratio: intervention (n = 83); control (n = 43) to either 3 weekly sessions of FACE-TC (Lyon Advance Care Planning Survey; Next Steps: Respecting Choices Interview; Five Wishes, advance directive) or treatment as usual (TAU). Statement of Treatment Preferences measured congruence. RESULT(S): Adolescents' (n = 126) mean age was 16.9 years; 57% were female and 79% were White. FACE-TC dyads had greater overall agreement than TAU: high 34% vs 2%, moderate 52% vs 45%, low 14% vs 52%, and P < .0001. Significantly greater odds of congruence were found for FACE-TC dyads than TAU for 3 of 4 disease-specific scenarios: for example, "a long hospitalization with low chance of survival," 78% (57 of 73) vs 45% (19 of 42); odds ratio, 4.31 (95% confidence interval, 1.89-9.82). FACE-TC families were more likely to agree to stop some treatments. Intervention adolescents, 67% (48 of 73), wanted their families to do what is best at the time, whereas fewer TAU adolescents, 43% (18 of 42), gave families this leeway (P = .01). CONCLUSION(S): High-quality pediatric advance care planning enabled families to know their adolescents' EOL treatment preferences. Copyright © 2022 by the American Academy of Pediatrics.
Identifier
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<a href="http://doi.org/10.1542/peds.2021-054796" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-054796</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
Advance Care Planning
Advance Directives
April 2022 List
Baker JN
Confidence Intervals
End Of Life
Friebert S
Jiang J
Lyon ME
Needle J
Odds Ratio
Pediatrics
United States
Wang J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/j.pcl.2007.10.011" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pcl.2007.10.011</a>
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Title
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Integration of Palliative Care Practices into the Ongoing Care of Children with Cancer: Individualized Care Planning and Coordination
Publisher
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Pediatric Clinics Of North America
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Creator
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Baker JN; Hinds PS; Spunt SL; Barfield RC; Allen C; Powell BC; Anderson LH; Kane JR
Description
An account of the resource
Most parents of children with cancer have dual primary goals: a primary cancer-directed goal of cure and a primary comfort-related goal of lessening suffering. Early introduction of palliative care principles and practices into their child's treatment is respectful and supportive of these goals. The Individualized Care Planning and Coordination Model is designed to integrate palliative care principles and practices into the ongoing care of children with cancer. Application of the model helps clinicians to generate a comprehensive individualized care plan that is implemented through Individualized Care Coordination processes as detailed here. Clinicians' strong desire to provide compassionate, competent, and sensitive care to the seriously ill child and the child's family can be effectively translated into clinical practice through these processes.
2008
Identifier
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<a href="http://doi.org/10.1016/j.pcl.2007.10.011" target="_blank" rel="noreferrer">10.1016/j.pcl.2007.10.011</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).
Type
The nature or genre of the resource
Journal Article
2008
Allen C
Anderson LH
Backlog
Baker JN
Barfield RC
Hinds PS
Journal Article
Kane JR
Pediatric Clinics of North America
Powell BC
Spunt SL
-
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.jpeds.2015.05.002" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1016/j.jpeds.2015.05.002</a>
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Title
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Research Priorities in Pediatric Palliative Care
Publisher
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Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Palliative Care; Parents/px [Psychology]; Humans; United States; Pediatrics; Delphi Technique; Attitude of Health Personnel; Research
Creator
An entity primarily responsible for making the resource
Baker JN; Levine D R; Hinds PS; Weaver MS; Cunningham MJ; Johnson L; Anghelescu D; Mandrell B; Gibson DV; Jones B; Wolfe J; Feudtner C; Friebert S; Carter B; Kane J R
Description
An account of the resource
OBJECTIVE: To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda. STUDY DESIGN: A 4-round modified Delphi online survey was administered to PPC experts and to parents of children who had received PPC. In round 1, research priorities were generated spontaneously. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. In round 4, participants were asked to rank the research priorities that had reached at least 80% consensus. RESULTS: A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for round 2 ratings (n = 130; 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98; 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education. CONCLUSIONS: This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families.
Identifier
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<a href="http://doi.org/10.1016/j.jpeds.2015.05.002" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2015.05.002</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
Anghelescu D
April 2019 List
Attitude Of Health Personnel
Baker JN
Carter B
Cunningham MJ
Delphi Technique
Feudtner C
Friebert S
Gibson DV
Hinds PS
Humans
Johnson L
Jones B
Journal of Pediatrics
Kane J R
Levine D R
Mandrell B
Palliative Care
Parents/px [psychology]
Pediatrics
Research
United States
Weaver MS
Wolfe J
-
Text
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1089/jpm.2008.0172" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2008.0172</a>
<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2941671/" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2941671/</a>
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Title
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Race Does Not Influence Do-Not-Resuscitate Status or the Number or Timing of End-of-Life Care Discussions at a Pediatric Oncology Referral Center
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
2009
Creator
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Baker JN; Rai S; Liu W; Srivastava K; Kane JR; Zawistowski CA; Burghen E; Gattuso JS; West NK; Althoff J; Funk A; Hinds PS
Description
An account of the resource
BACKGROUND: End-of-life care (EOLC) discussions and decisions are common in pediatric oncology. Interracial differences have been identified in adult EOLC preferences, but the relation of race to EOLC in pediatric oncology has not been reported. We assessed whether race (white, black) was associated with the frequency of do-not-resuscitate (DNR) orders, the number and timing of EOLC discussions, or the timing of EOLC decisions among patients treated at our institution who died. METHODS: We reviewed the records of 380 patients who died between July 1, 2001 and February 28, 2005. χ(2) and Wilcoxon rank-sum tests were used to test the association of race with the number and timing of EOLC discussions, the number of DNR changes, the timing of EOLC decisions (i.e., DNR order, hospice referral), and the presence of a DNR order at the time of death. These analyses were limited to the 345 patients who selfidentified as black or white. RESULTS: We found no association between race and DNR status at the time of death (p = 0.57), the proportion of patients with DNR order changes (p = 0.82), the median time from DNR order to death (p = 0.51), the time from first EOLC discussion to DNR order (p = 0.12), the time from first EOLC discussion to death (p = 0.33), the proportion of patients who enrolled in hospice (p = 0.64), the time from hospice enrollment to death (p = 0.2) or the number of EOLC discussions before a DNR decision (p = 0.48). CONCLUSION: When equal access to specialized pediatric cancer care is provided, race is not a significant factor in the presence or timing of a DNR order, enrollment in or timing of enrollment in hospice, or the number or timing of EOLC discussions before death.
2009-01
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2008.0172" target="_blank" rel="noreferrer">10.1089/jpm.2008.0172</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
2009
Althoff J
Backlog
Baker JN
Burghen E
Funk A
Gattuso JS
Hinds PS
Journal Article
Journal of Palliative Medicine
Kane JR
Liu W
Rai S
Srivastava K
West NK
Zawistowski CA
-
Dublin Core
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Title
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Oncology
Text
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Citation List Month
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1089/jpm.2008.0172" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2008.0172</a>
Dublin Core
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Title
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Race does not influence do-not-resuscitate status or the number or timing of end-of-life care discussions at a pediatric oncology referral center
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
African Continental Ancestry Group; Cancer Care Facilities; Decision Making; European Continental Ancestry Group; Pediatrics; Resuscitation Orders; Terminal Care; Adolescent; Child; Female; Humans; Infant; Male; Medical Audit; Preschool; United States
Creator
An entity primarily responsible for making the resource
Baker JN; Rai S; Liu W; Srivastava K; Kane JR; Zawistowski CA; Burghen EA; Gattuso JS; West N; Althoff J; Funk A; Hinds PS
Description
An account of the resource
BACKGROUND: End-of-life care (EOLC) discussions and decisions are common in pediatric oncology. Interracial differences have been identified in adult EOLC preferences, but the relation of race to EOLC in pediatric oncology has not been reported. We assessed whether race (white, black) was associated with the frequency of do-not-resuscitate (DNR) orders, the number and timing of EOLC discussions, or the timing of EOLC decisions among patients treated at our institution who died. METHODS: We reviewed the records of 380 patients who died between July 1, 2001 and February 28, 2005. Chi(2) and Wilcoxon rank-sum tests were used to test the association of race with the number and timing of EOLC discussions, the number of DNR changes, the timing of EOLC decisions (i.e., DNR order, hospice referral), and the presence of a DNR order at the time of death. These analyses were limited to the 345 patients who self-identified as black or white. RESULTS: We found no association between race and DNR status at the time of death (p = 0.57), the proportion of patients with DNR order changes (p = 0.82), the median time from DNR order to death (p = 0.51), the time from first EOLC discussion to DNR order (p = 0.12), the time from first EOLC discussion to death (p = 0.33), the proportion of patients who enrolled in hospice (p = 0.64), the time from hospice enrollment to death (p = 0.2) or the number of EOLC discussions before a DNR decision (p = 0.48). CONCLUSION: When equal access to specialized pediatric cancer care is provided, race is not a significant factor in the presence or timing of a DNR order, enrollment in or timing of enrollment in hospice, or the number or timing of EOLC discussions before death.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2008.0172" target="_blank" rel="noreferrer">10.1089/jpm.2008.0172</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2009
Adolescent
African Continental Ancestry Group
Althoff J
Baker JN
Burghen EA
Cancer Care Facilities
Child
Decision Making
European Continental Ancestry Group
Female
Funk A
Gattuso JS
Hinds PS
Humans
Infant
Journal of Palliative Medicine
Kane JR
Liu W
Male
Medical Audit
Oncology 2017 List
Pediatrics
Preschool
Rai S
Resuscitation Orders
Srivastava K
Terminal Care
United States
West N
Zawistowski CA
-
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.jpeds.2013.01.015" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpeds.2013.01.015</a>
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Title
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Bereaved parents' intentions and suggestions about research autopsies in children with lethal brain tumors
Publisher
An entity responsible for making the resource available
The Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Child; Humans; bereavement; Parents; Prospective Studies; Attitude; Autopsy; Biomedical Research; Intention; Brain neoplasms
Creator
An entity primarily responsible for making the resource
Baker JN; Windham JA; Hinds PS; Gattuso JS; Mandrell BN; Gajjar P; West NK; Hammarback T; Broniscer A
Description
An account of the resource
OBJECTIVE: To determine bereaved parents' perceptions about participating in autopsy-related research and to elucidate their suggestions about how to improve the process. STUDY DESIGN: A prospective multicenter study was conducted to collect tumor tissue by autopsy of children with diffuse intrinsic pontine glioma. In the study, parents completed a questionnaire after their child's death to describe the purpose for, hopes (ie, desired outcomes of), and regrets about their participation in autopsy-related research. Parents also suggested ways to improve autopsy-related discussions. A semantic content analytic method was used to analyze responses and identify themes within and across parent responses. RESULTS: Responses from 33 parents indicated that the main reasons for participating in this study were to advance medical knowledge or find a cure, a desire to help others, and choosing as their child would want. Parents hoped that participation would help others or help find a cure as well as provide closure. Providing education/anticipatory guidance and having a trusted professional sensitively broach the topic of autopsy were suggestions to improve autopsy discussions. All parents felt that study participation was the right decision, and none regretted it; 91% agreed that they would make the choice again. CONCLUSION: Because autopsy can help advance scientific understanding of the disease itself and because parents reported having no regret and even cited benefits, researchers should be encouraged to continue autopsy-related research. Parental perceptions about such studies should be evaluated in other types of pediatric diseases.
2013-08
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpeds.2013.01.015" target="_blank" rel="noreferrer">10.1016/j.jpeds.2013.01.015</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
2013
Attitude
Autopsy
Backlog
Baker JN
Bereavement
Biomedical Research
Brain Neoplasms
Broniscer A
Child
Gajjar P
Gattuso JS
Hammarback T
Hinds PS
Humans
Intention
Journal Article
Mandrell BN
Parents
Prospective Studies
The Journal Of Pediatrics
West NK
Windham JA
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1089/jpm.2014.0095" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2014.0095</a>
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Title
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Reported Availability and Gaps of Pediatric Palliative Care in Low- and Middle-Income Countries: A Systematic Review of Published Data
Publisher
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Journal Of Palliative Medicine
Date
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2014
Creator
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Caruso Brown AE; Howard SC; Baker JN; Ribeiro RC; Lam CG
Description
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Abstract Background: The majority of young people in need of palliative care live in low- and middle-income countries, where curative treatment is less available. Objective: We systematically reviewed published data describing palliative care services available to young people with life-limiting conditions in low- and middle-income countries and assessed core elements with respect to availability, gaps, and under-reported aspects. Methods: PubMed, CINAHL, EMBASE (1980-2013), and secondary bibliographies were searched for publications that included patients younger than 25 years with life-limiting conditions and described palliative care programs in low- and middle-income countries. A data extraction checklist considered 15 items across seven domains: access, education/capacity building, health system support, pain management, symptom management, end-of-life care, and bereavement. Data were aggregated by program and country. Results: Of 1572 records, 238 met criteria for full-text review; 34 qualified for inclusion, representing 30 programs in 21 countries. The median checklist score was 7 (range, 1-14) of 10 reported (range, 3-14). The most pervasive gaps were in national health system support (unavailable in 7 of 17 countries with programs reporting), specialized education (unavailable in 7 of 19 countries with programs reporting), and comprehensive opioid access (unavailable in 14 of 21 countries with programs reporting). Underreported elements included specified practices for pain management and end-of-life support. Conclusion: Comprehensive pediatric palliative care provision is possible even in markedly impoverished settings. Improved national health system support, specialized training and opioid access are key targets for research and advocacy. Application of a checklist methodology can promote awareness of gaps to guide program evaluation, reporting, and strengthening.
2014-09
Identifier
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<a href="http://doi.org/10.1089/jpm.2014.0095" target="_blank" rel="noreferrer">10.1089/jpm.2014.0095</a>
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Type
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Journal Article
2014
Backlog
Baker JN
Caruso Brown AE
Howard SC
Journal Article
Journal of Palliative Medicine
Lam CG
Ribeiro RC
-
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Title
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April 2018 List
Text
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Citation List Month
April 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.144" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2017.12.144</a>
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Title
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Partnering with Payers to Meet the Needs of Pediatric Palliative Care Patients (FR473)
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
The topic of the resource
Palliative Care
Creator
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Cunningham MJ; Williamson S; Baker JN; Pennington K; Young A; Bolick R; Norton C
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.144" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.144</a>
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2018
April 2018 List
Baker JN
Bolick R
Cunningham MJ
Journal of Pain and Symptom Management
Norton C
Palliative Care
Pennington K
Williamson S
Young A
-
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Title
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January 2023 List
Text
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Citation List Month
January List 2023
URL Address
<a href="http://doi.org/10.1177/10499091221138298" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/10499091221138298</a>
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Title
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Palliative Sedation Therapy Practice Comparison – A Survey of Pediatric Palliative Care and Pain Management Specialists
Publisher
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American Journal of Hospice and 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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Dexmedetomidine; End of Life; Pain Management; Palliative Care; Palliative Sedation Therapy; Propofol; Symptom Management
Creator
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Cuviello A; Ang N; Morgan K; Baker JN; Anghelescu DL
Description
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Context: Palliative sedation therapy (PST) can relieve suffering at end-of-life (EOL) in children with intolerable and refractory symptoms. However, updated and consistent guidance on PST practices are imperative. Objectives: We investigate current variations in clinical practice and PST implementation among pediatric palliative care (PPC) and pain management (PM) specialists. Methods: We distributed an IRB-exempt electronic anonymous survey via email through the Society of Pediatric Pain Medicine, and the American Academy of Hospice and Palliative Medicine. Survey responses were collated and descriptively reported. Results: Of 83 survey responses, the majority (75%) represented large academic children’s hospitals. The distribution between PPC and pediatric pain management specialists’ responses was 60% and 40%, respectively. Most respondents reported having designated pain management and/or palliative care teams (70% and 90%, respectively). Approximately half (48%) reported following an institutional PST protocol, most not requiring formal ethics consult (69%). Only 54% of respondents noted that the Do Not Resuscitate (DNR) order was required prior to PST initiation. PST was primarily utilized for children with oncologic diagnoses (76%). The primary and secondary medications of choice for PST implementation were reported to be opioids (39%) and benzodiazepines (36%) by pain management specialists, and benzodiazepines (52%) and barbiturates (28%) by palliative care specialists. Conclusions: Our study highlights the variability in the practice and implementation of PST. Further educational efforts are key for establishing PST practices and efficient protocol development.
Identifier
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<a href="http://doi.org/10.1177/10499091221138298" target="_blank" rel="noreferrer noopener">10.1177/10499091221138298</a>
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Palliative Care
2022
American Journal of Hospice and Palliative Medicine®
Ang N
Anghelescu DL
Baker JN
Cuviello A
Dexmedetomidine
End Of Life
January List 2023
Morgan K
Pain Management
Palliative Sedation Therapy
Propofol
Symptom Management
-
Dublin Core
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Title
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January 2023 List
Text
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Citation List Month
January List 2023
URL Address
<a href="http://doi.org/10.3390/children9121887" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9121887</a>
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Title
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Palliative Sedation Therapy in Pediatrics: An Algorithm and Clinical Practice Update
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Palliative; Sedation
Creator
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Cuviello A; Johnson LM; Morgan K; Anghelescu DL; Baker JN
Identifier
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<a href="http://doi.org/10.3390/children9121887" target="_blank" rel="noreferrer noopener">10.3390/children9121887</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
Anghelescu DL
Baker JN
Children
Cuviello A
January List 2023
Johnson LM
Morgan K
Palliative
Sedation
-
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/10.3389/fonc.2022.1017272" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fonc.2022.1017272</a>
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Title
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Compassionate de-escalation of life-sustaining treatments in pediatric oncology: An opportunity for palliative care and intensive care collaboration
Publisher
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Frontiers in Oncology
Date
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2022
Creator
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Cuviello A; Pasli M; Hurley C; Bhatia S; Anghelescu DL; Baker JN
Description
An account of the resource
CONTEXT: Approximately 40%-60% of deaths in the pediatric intensive care unit (PICU) are in the context of de-escalation of life-sustaining treatments (LSTs), including compassionate extubation, withdrawal of vasopressors, or other LSTs. Suffering at the end of life (EOL) is often undertreated and underrecognized. Pain and poor quality of life are common concerns amongst parents and providers at a child's EOL. Integration of palliative care (PC) may decrease suffering and improve symptom management in many clinical situations; however, few studies have described medical management and symptom burden in children with cancer in the pediatric intensive care unit (PICU) undergoing de-escalation of LSTs. METHODS: A retrospective chart review was completed for deceased pediatric oncology patients who experienced compassionate extubation and/or withdrawal of vasopressor support at EOL in the PICU. Demographics, EOL characteristics, and medication use for symptom management were abstracted. Descriptive analyses were applied. RESULTS: Charts of 43 patients treated over a 10-year period were reviewed. Most patients (69.8%) were white males who had undergone hematopoietic stem cell transplantation and experienced compassionate extubation (67.4%) and/or withdrawal of vasopressor support (44.2%). The majority (88.3%) had a physician order for scope of treatment (POST - DNaR) in place an average of 13.9 days before death. PC was consulted for all but one patient; however, in 18.6% of cases, consultations occurred on the day of death. During EOL, many patients received medications to treat or prevent respiratory distress, pain, and agitation/anxiety. Sedative medications were utilized, specifically propofol (14%), dexmedetomidine (12%), or both (44%), often with opioids and benzodiazepines. CONCLUSIONS: Pediatric oncology patients undergoing de-escalation of LSTs experience symptoms of pain, anxiety, and respiratory distress during EOL. Dexmedetomidine and propofol may help prevent and/or relieve suffering during compassionate de-escalation of LSTs. Further efforts to optimize institutional policies, education, and collaborations between pediatric intensivists and PC teams are needed.
Identifier
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<a href="http://doi.org/10.3389/fonc.2022.1017272" target="_blank" rel="noreferrer noopener">10.3389/fonc.2022.1017272</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
2022 Special Edition 3 - Oncology List
Anghelescu DL
Baker JN
Bhatia S
Cuviello A
Dexmedetomidine
End Of Life
Frontiers in Oncology
Hurley C
Palliative Care
Palliative sedation
Pasli M
Pediatric Oncology
Propofol
Symptom Management
Therapy
-
Dublin Core
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Title
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2022 Special Edition 4 - Low Resource Setting 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
2022 Special Edition Low Resource Setting Issue
URL Address
<a href="http://doi.org/10.1200/go.21.00270" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1200/go.21.00270</a>
Dublin Core
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Title
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Translating Research to Action: The Development of a Pediatric Palliative Cancer Care Advocacy Tool in Eurasia
Publisher
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JCO Global Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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advocacy; children with cancer; pediatric palliative care
Creator
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Ehrlich BS; Yakimkova T; Batmunkh T; Mishkova V; Movsisyan N; Kirgizov K; Borisevich M; Kizyma R; Graetz DE; McNeil MJ; Vinitsky A; Smelov V; Corbex M; Lam CG; Kaye EC; Baker JN; Agulnik A
Description
An account of the resource
PURPOSE: The Assessing Doctors' Attitudes on Palliative Treatment study was conducted in 11 Eurasian countries to assess physician knowledge of and structural barriers to integration of palliative care into pediatric oncology. After publication, regional collaborators identified the need to disseminate country-specific study results locally and provide policy recommendations to inform stakeholders. METHODS: The Assessing Doctors' Attitudes on Palliative Treatment report was developed with Eurasian and St Jude pediatric palliative care and oncology experts to summarize study findings and deliver country-level data to local stakeholders. In parallel, an assessment was developed to explore how regional collaborators intend to use the report to improve local advocacy and dissemination of research findings. The country report and assessment were translated to English, Russian, and Mongolian. RESULTS: Country-specific two-page reports display study findings on pediatric palliative care education, access to pediatric palliative care services, and barriers to and timing of integration with cancer care, alongside clinical and policy recommendations. These reports were distributed to collaborators in 11 countries. Assessment results (N = 30) demonstrated that regional collaborators planned to distribute the report to institutional and government stakeholders, aiming to increase access to pediatric palliative care services (77%), establish a community-based palliative care network (70%), and increase opportunities for specialization (70%). CONCLUSION: We describe the development of an evidence-based advocacy tool to inform local health and education policy in Eurasia. This summary report of study findings, translated to local languages and adapted to a broader audience, is currently used to advocate for greater access and quality of palliative care for children with cancer. This work may serve as the basis for future dissemination efforts of scientific research.
Identifier
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<a href="http://doi.org/10.1200/go.21.00270" target="_blank" rel="noreferrer noopener">10.1200/go.21.00270</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
2022 Special Edition Low Resource Setting Issue
Advocacy
Agulnik A
Baker JN
Batmunkh T
Borisevich M
children with cancer
Corbex M
Ehrlich BS
Graetz DE
JCO Global Oncology
Kaye EC
Kirgizov K
Kizyma R
Lam CG
McNeil MJ
Mishkova V
Movsisyan N
Pediatric Palliative Care
Smelov V
Vinitsky A
Yakimkova T
-
Dublin Core
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Title
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2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.144" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.12.144</a>
Dublin Core
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Title
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“It's Hard Not to Have Regrets:” Qualitative Analysis of Decisional Regret in Bereaved Parents
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
2023
Subject
The topic of the resource
Parents; child; Bereavement; pediatric cancer; parent; bereavement; decisional regret
Creator
An entity primarily responsible for making the resource
Feifer D; Broden E; Baker JN; Wolfe J; Snaman J
Description
An account of the resource
Context Bereaved parents may have heightened risk for decisional regret; however, little is known about regret early in bereavement. Objectives We characterized decisional regrets endorsed by parents of children who died from cancer within the first two years of their bereavement. Methods We analyzed responses from a cross-sectional, dual site study of parents 6 to 24 months from their child's death. Parents indicated whether they had regrets about decisions made at the end of their child's life (yes/no/I don't know) and elaborated with free text. We used content analysis to identify recurrent categories in parents’ responses. Results A total of 125 parents of 88 children completed the survey; 123 responded to the decisional regret item and 84 (63%) elaborated with free text. Forty-seven (38%) parents reported decisional regret(s), 61 (50%) indicated no regret(s), and 15 (12%) were unsure. Parental free-text responses related to 5 categories: treatments, including those pursued and/or not pursued (n=57), decision-making processes (n=35), relationships with their child and care team (n=26), child suffering (n=10), and end-of-life characteristics (n=6). The relative frequency of categories was similar in parents with and without decisional regret, but self-blame was more common in responses from parents with decisional regret. Conclusion Many bereaved parents endorse decisional regret in early bereavement. Treatments and decision-making processes were most cited among parents both with and without regret. Identifying factors associated with heightened parental risk of decisional regret using longitudinal study is an important focus of future research.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.144" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.144</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).
2023
2023 SE3 - Oncology
Baker JN
Bereavement
Broden E
Child
Decisional regret
Feifer D
Journal of Pain and Symptom Management
Parent
Parents
Pediatric Cancer
Snaman J
Wolfe J
-
Dublin Core
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.30541" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.30541</a>
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Title
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Mixed-methods analysis of decisional regret in parents following a child's death from cancer
Publisher
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Pediatric Blood and Cancer
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; grief; Only Child; parent; decisional regret; mixed methods
Creator
An entity primarily responsible for making the resource
Feifer D; Broden EG; Xiong N; Mazzola E; Baker JN; Wolfe J; Snaman JM
Description
An account of the resource
BACKGROUND AND OBJECTIVES: Decisional regret is common in bereaved parents. We aimed to identify factors associated with and to explain patterns of parental decisional regret. METHODS: We used a convergent mixed-methods design including quantitative items and free-text responses from a survey of parents 6-24 months from their child's death from cancer. Parents expressed whether they had regrets about decisions during the end of their child's life (Yes/No/I don't know) and elaborated with free text. Results of qualitative content analysis of free-text responses guided development and interpretation of quantitative multinomial models. RESULTS: Parents (N = 123 surveys, N = 84 free text) primarily identified as White (84%), mothers (63%), and primary caregivers (69%) for their children. Forty-seven (38%) parents reported decisional regret, 61 (49%) indicated no regret, and 15 (12%) were unsure. Mothers (relative risk [RR]: 10.3, 95%CI: [1.3, 81.3], p = .03) and parents who perceived greater suffering at the end of their child's life (RR = 3.8, 95%CI: [1.2, 11.7], p = .02) were at increased risk of regret; qualitative evaluation revealed elements of self-blame and difficulty reconciling treatment choices with the ultimate outcome. Preparation for symptoms was associated with decreased risk of regret (RR = 0.1, 95%CI: [0, .3], p < .01) with qualitative reflections focused on balanced teamwork that alerted parents for what to expect and how to make meaningful final memories. CONCLUSIONS: Though decisional regret is common among cancer-bereaved parents, mothers and those who perceive more suffering in their children may be at particular risk. Close collaboration between families and clinicians to prepare for symptoms and proactively attend to and minimize suffering may help alleviate decisional regret.
Identifier
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<a href="http://doi.org/10.1002/pbc.30541" target="_blank" rel="noreferrer noopener">10.1002/pbc.30541</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).
2023
2023 SE3 - Oncology
Baker JN
Broden EG
Child
Decisional regret
Feifer D
Grief
Mazzola E
Mixed methods
Only Child
Parent
Pediatric Blood and Cancer
Snaman JM
Wolfe J
Xiong N
-
Dublin Core
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Title
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Oncology
Text
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Citation List Month
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1089/jpm.2014.0364" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2014.0364</a>
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Methylnaltrexone for Opioid-Induced Constipation in Children and Adolescents and Young Adults with Progressive Incurable Cancer at the End of Life
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
2015
Creator
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Flerlage JE; Baker JN
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<a href="http://doi.org/10.1089/jpm.2014.0364" target="_blank" rel="noreferrer">10.1089/jpm.2014.0364</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
Baker JN
Flerlage JE
Journal of Palliative Medicine
Oncology 2017 List
-
Dublin Core
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Title
A name given to the resource
2022 Special Edition 4 - Low Resource Setting 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
2022 Special Edition Low Resource Setting Issue
URL Address
<a href="http://doi.org/10.3390/children9060838" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9060838</a>
Dublin Core
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Title
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Using EmPalPed—An Educational Toolkit on Essential Messages in Palliative Care and Pain Management in Children—As a Strategy to Promote Pediatric Palliative Care
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
education; healthcare professional; low-income countries; middle-income countries; pain assessment; pediatric palliative care; physicians
Creator
An entity primarily responsible for making the resource
García-Quintero X; Claros-Hulbert A; Tello-Cajiao ME; Bolaños-Lopez JE; Cuervo-Suárez MI; Durán MGG; Gomez Garcia W; McNeil M; Baker JN
Description
An account of the resource
Background: Most children needing palliative care (PC) live in low- and middle-income countries. In Colombia, pediatric palliative care (PPC) knowledge among healthcare professionals (HCPs) is lacking as PPC is not included in the educational curricula of healthcare programs. Therefore, specific training that improves knowledge of HCPs and access to PC for children and their families is needed. To address this gap, we organized and conducted the Essential Messages in Palliative Care and Pain Management in Children (EmPalPed), an educational toolkit to increase awareness and promote essential knowledge in PPC for low- and middle-income countries. Methodology: The EmPalPed toolkit consisted of a 5-h virtual workshop with small working groups of HCPs caring for children with life-threatening conditions such as cancer. The toolkit was organized along five key domains: (1) PC as it relates to the concept of quality of life (QoL), (2) effective communication, (3) addressing pain management as a top priority, (4) providing end-of-life care, and (5) access to high-quality PC as a fundamental human right. The workshop activities included different educational strategies and tools (e.g., a pocket guide for pain assessment and management, a PPC booklet, a quick guide for communicating bad news, role playing, and discussions of clinical cases). Results: A total of 145 HCPs from 22 centers were trained. The post-test analysis for HCPs showed that attitude and knowledge about communication (p < 0.001), pain assessment (p < 0.001), first-line opioid of choice in children (p < 0.001), and palliative sedation (p < 0.001) had positive and statistically significant changes from the pre-test analysis. Discussion: This study supported the notion that the EmPalPed educational toolkit is an effective mechanism for raising awareness regarding PPC as well as providing training in many of the key aspects of PPC. The EmPalPed training approach should be studied beyond this setting, and the impact should be measured longitudinally.
Identifier
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<a href="http://doi.org/10.3390/children9060838" target="_blank" rel="noreferrer noopener">10.3390/children9060838</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
2022 Special Edition Low Resource Setting Issue
Baker JN
Bolaños-Lopez JE
Children
Claros-Hulbert A
Cuervo-Suárez MI
Durán MGG
Education
García-Quintero X
Gomez Garcia W
Healthcare Professional
low-income countries
McNeil M
middle-income countries
Pain Assessment
Pediatric Palliative Care
Physicians
Tello-Cajiao ME
-
Dublin Core
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Title
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1200/go.22.00281" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1200/go.22.00281</a>
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Title
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Communication of Early Integration of Palliative Care for Children With Cancer in Latin America: The Care as a Vessel Metaphor
Publisher
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JCO Global Oncology
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; Communication; Palliative Care; Latin America; Neoplasms/therapy; Metaphor; Latin America/epidemiology
Creator
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Garcia-Quintero X; Cleves D; Cuervo MI; McNeil M; Salek M; Robertson EG; Gomez W; Baker JN; Kaye EC
Description
An account of the resource
``Over the past two decades, pediatric palliative care (PPC) has evolved significantly, moving away from the concept of care provided solely at end-of-life and toward the concept of holistic, supportive care provided synergistically with disease-directed therapy across the illness course.1 Presently, the WHO defines PPC as holistic care involving all aspects of the life of a child with serious illness and their family, including the care and support of the body, mind, and spirit.2 As such, the WHO advocates for PPC provision to begin at the time of diagnosis of a life-limiting condition and continue across treatment, regardless of whether the goal is cure, life prolongation, or comfort.3 Numerous guidelines endorsed by national organizations similarly advocate for early integration of PPC in the care of patients with pediatric cancer,4-7 recognizing that involvement of PPC concurrently with cancer-directed treatment promotes patient-and family-centered care, aligns treatment with goals of care, and optimizes supportive care and quality of life.2,4-8...``
Identifier
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<a href="http://doi.org/10.1200/go.22.00281" target="_blank" rel="noreferrer noopener">10.1200/go.22.00281</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).
2023
2023 SE5 - Low Resource Setting
Baker JN
Child
Cleves D
Communication
Cuervo MI
García-Quintero X
Gomez W
Humans
JCO Global Oncology
Kaye EC
Latin America
Latin America/epidemiology
McNeil M
Metaphor
Neoplasms/therapy
Palliative Care
Robertson EG
Salek M
-
Text
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1089/jpm.2005.8.s-70" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2005.8.s-70</a>
Dublin Core
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Title
A name given to the resource
Key factors affecting dying children and their families
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
2005
Subject
The topic of the resource
Child; Humans; Professional-Family Relations; Communication; Quality of Health Care; Stress; adolescent; bereavement; decision making; Family/psychology; Palliative Care/standards; Terminal Care/standards; Psychological/etiology
Creator
An entity primarily responsible for making the resource
Hinds PS; Schum L; Baker JN; Wolfe J
Description
An account of the resource
The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships, and may be the basis for health care providers' decisions to exit direct care roles. Thus, facilitating a "good death"-an obvious care priority for all involved with the dying child-ought also to be a priority for the health of bereaved families and affected health care providers. Making this a care priority is complicated by a serious lack of data, as details of the last hours or weeks of a dying child or adolescent's life are largely unknown. The purpose of this paper is to identify key factors that affect the course of dying children and adolescents and that of their bereaved survivors, and to link those key factors to needed research that could produce clinically relevant findings to improve the care of these patients. Key factors described here include suffering (physical, psychological, and spiritual), communication, decision making, prognostic ambiguities, ability of the seriously ill child to give assent to research participation, and educational preparation of health care providers to give competent end-of-life care.
2005
Identifier
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<a href="http://doi.org/10.1089/jpm.2005.8.s-70" target="_blank" rel="noreferrer">10.1089/jpm.2005.8.s-70</a>
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Type
The nature or genre of the resource
Journal Article
2005
Adolescent
Backlog
Baker JN
Bereavement
Child
Communication
Decision Making
Family/psychology
Hinds PS
Humans
Journal Article
Journal of Palliative Medicine
Palliative Care/standards
Professional-family Relations
Psychological/etiology
Quality Of Health Care
Schum L
Stress
Terminal Care/standards
Wolfe J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/j.pcl.2014.04.012" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pcl.2014.04.012</a>
Dublin Core
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Title
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End-of-Life Care for Hospitalized Children
Publisher
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Pediatric Clinics Of North America
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
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Child; Hospital; end-of-life care
Creator
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Johnson L-M; Snaman JM; Cupit MC; Baker JN
Description
An account of the resource
High-quality palliative care is the standard for children with life-threatening illness, especially when a cure is not possible. This review outlines a model for clinical practice that integrates clinical, psychosocial, and ethical concerns at the end of life (EOL) into a standard operating procedure specifically focused on inpatient deaths. Palliative care for children at EOL in the hospital setting should encompass the personal, cultural, and spiritual needs of the child and family members and aim to minimize suffering and increase support for all who are involved, including hospital staff.
2014-08
Identifier
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<a href="http://doi.org/10.1016/j.pcl.2014.04.012" target="_blank" rel="noreferrer">10.1016/j.pcl.2014.04.012</a>
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Type
The nature or genre of the resource
Journal Article
2014
Backlog
Baker JN
Child
Cupit MC
End-of-life Care
Hospital
Johnson L-M
Journal Article
Pediatric Clinics of North America
Snaman JM
-
Dublin Core
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Title
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Oncology
Text
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Citation List Month
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1542/peds.2017-0487" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2017-0487</a>
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Title
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Palliative Sedation With Propofol for an Adolescent With a DNR Order
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Creator
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Johnson Liza-Marie; Frader J; Wolfe J; Baker JN; Anghelescu Doralina L; Lantos JD
Description
An account of the resource
Death from cancer is often painful. Usually, the pain can be relieved in ways that allow patients to remain awake and alert until the end. Sometimes, however, the only way to relieve pain is to sedate patients until they are unconscious. This method has been called palliative sedation therapy. Palliative sedation therapy is controversial because it can be misunderstood as euthanasia. We present a case in which an adolescent who is dying of leukemia has intractable pain. Experts in oncology, ethics, pain management, and palliative care discuss the trade-offs associated with different treatment strategies.
Identifier
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<a href="http://doi.org/10.1542/peds.2017-0487" target="_blank" rel="noreferrer">10.1542/peds.2017-0487</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
Anghelescu Doralina L
Baker JN
Frader J
Johnson Liza-Marie
Lantos JD
Oncology 2017 List
Pediatrics
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
Oncology
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 2017 List
URL Address
<a href="http://doi.org/10.1080/15265161.2015.1021965" target="_blank" rel="noreferrer">http://doi.org/10.1080/15265161.2015.1021965</a>
Dublin Core
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Title
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Ethics consultation in pediatrics: long-term experience from a pediatric oncology center
Publisher
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The American Journal Of Bioethics : Ajob
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Creator
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Johnson LM; Church CL; Metzger M; Baker JN
Identifier
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<a href="http://doi.org/10.1080/15265161.2015.1021965" target="_blank" rel="noreferrer">10.1080/15265161.2015.1021965</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2015
Baker JN
Church CL
Johnson LM
Metzger M
Oncology 2017 List
The American Journal Of Bioethics : Ajob
-
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/10.1002/cncr.29354" target="_blank" rel="noreferrer">http://doi.org/10.1002/cncr.29354</a>
Dublin Core
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Title
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Practical communication guidance to improve phase 1 informed consent conversations and decision-making in pediatric oncology
Publisher
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Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Ethics; patient perspectives; Pediatric oncology; physician communication
Creator
An entity primarily responsible for making the resource
Johnson LM; Leek AC; Drotar D; Noll RB; Rheingold SR; Kodish ED; Baker JN
Description
An account of the resource
BACKGROUND: It can be difficult to explain pediatric phase 1 oncology trials to families of children with refractory cancer. Parents may misunderstand the information presented to them, and physicians may assume that certain topics are covered in the informed consent document and need not be discussed. Communication models can help to ensure effective discussions. METHODS: Suggestions for improving the informed consent process were first solicited from phase 1 study clinicians via questionnaire. Eight parents who had enrolled their child on a phase 1 pediatric oncology trial were recruited for an advisory group designed to assess the clinicians' suggestions and make additional recommendations for improving informed consent for pediatric phase 1 trials. RESULTS: A phase 1 communication model was designed to incorporate the suggestions of clinicians and families. It focused on educating parents/families about phase 1 trials at specific time points during a child's illness, but specifically at the point of disease recurrence. An informative phase 1 fact sheet that can be distributed to families was also presented. CONCLUSIONS: Families who will be offered information regarding phase 1 clinical trials can first receive a standardized fact sheet explaining the general purpose of these early-phase clinical trials. Parental understanding may be enhanced further when oncologists address key themes, beginning at the time of diagnosis and continuing through important decision points during the child's illness. This model should be prospectively evaluated. Cancer 2015. © 2015 American Cancer Society.
2015-04
Identifier
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<a href="http://doi.org/10.1002/cncr.29354" target="_blank" rel="noreferrer">10.1002/cncr.29354</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
2015
Backlog
Baker JN
Cancer
Drotar D
Ethics
Johnson LM
Journal Article
Kodish ED
Leek AC
Noll RB
patient perspectives
Pediatric Oncology
physician communication
Rheingold SR
-
Dublin Core
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Title
A name given to the resource
Oncology
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 2017 List
URL Address
<a href="http://doi.org/10.1371/journal.pone.0181024" target="_blank" rel="noreferrer">http://doi.org/10.1371/journal.pone.0181024</a>
Dublin Core
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Title
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The bereavement experience of adolescents and early young adults with cancer: Peer and parental loss due to death is associated with increased risk of adverse psychological outcomes
Publisher
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Plos One
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Creator
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Johnson LM; Torres C; Sykes A; Gibson DV; Baker JN
Description
An account of the resource
BACKGROUND: Adolescents commonly experience loss due to death, and perceived closeness to the deceased can often increase the intensity of bereavement. Adolescents and early young adult (AeYA) oncology patients may recall previous losses or experience new losses, possibly of other children with cancer, while coping with their own increased risk of mortality. The bereavement experiences of AeYA patients are not well described in the literature. METHODS AND FINDINGS: This analysis of bereavement sought to describe the prevalence and types of losses, the support following a death, and the impact of loss on AeYAs aged 13-21 years with malignant disease (or a hematologic disorder requiring allogeneic transplant). Participants were receiving active oncologic therapy or had completed therapy within the past 3 years. Participants completed a bereavement questionnaire and inventories on depression, anxiety, and somatization. The cross-sectional study enrolled 153 AeYAs (95% participation), most (88%) of whom had experienced a loss due to death. The most commonly reported losses were of a grandparent (58%) or friend (37%). Peer deaths were predominantly cancer related (66%). Many participants (39%) self-identified a loss as "very significant." As loss significance increased, AeYAs were more likely to report that it had changed their life "a lot/enormously" (P<0.0001), that they were grieving "slowly or never got over it" (P<0.0001), and that they felt a need for more professional help (P = 0.026). Peer loss was associated with increased risk of adverse psychological outcomes (P = 0.029), as was parental loss (P = 0.018). CONCLUSIONS: Most AeYAs with serious illness experience the grief process as slow or ongoing. Peer or parental loss was associated with increased risk of negative mental health outcomes. Given the high prevalence of peer loss, screening for bereavement problems is warranted in AeYAs with cancer, and further research on grief and bereavement is needed in AeYAs with serious illness.
Identifier
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<a href="http://doi.org/10.1371/journal.pone.0181024" target="_blank" rel="noreferrer">10.1371/journal.pone.0181024</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
Baker JN
Gibson DV
Johnson LM
Oncology 2017 List
PLoS One
Sykes A
Torres C
-
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/10.1001/jamanetworkopen.2021.20925" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamanetworkopen.2021.20925</a>
Dublin Core
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Title
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Facilitators Associated With Building and Sustaining Therapeutic Alliance in Advanced Pediatric Cancer
Publisher
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JAMA Network Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Oncology
Creator
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Kaye EC; Rockwell S; Woods C; Lemmon ME; Andes K; Baker JN; Mack JW
Description
An account of the resource
Importance: Therapeutic alliance is a core component of patient- and family-centered care, particularly in the setting of advancing cancer. Communication approaches used by pediatric oncologists to foster therapeutic alliance with children with cancer and their families are not well understood. Objectives: To identify key oncologist-driven facilitators associated with building and sustaining therapeutic alliance in the setting of advancing pediatric cancer and to develop a framework to guide clinical practice and future investigation of therapeutic alliance. Design, Setting, and Participants: In this qualitative study, serial disease reevaluation discussions that occurred in the clinic, inpatient hospital, or off campus via telephone were recorded among pediatric oncologists, patients with high-risk cancer, and their families across 24 months or until death, whichever occurred first, from 2016 to 2020. This analysis focused on recorded discussions for pediatric patients who experienced progressive disease during the study period. Content analysis was conducted across recorded dialogue to derive inductive codes and identify themes. Participants were patient-parent dyads for whom a primary oncologist projected the patient's survival to be 50% or less, all family members and friends who attended any of their recorded disease reevaluation conversations, and their oncologists and other clinicians who attended the recorded discussions. Results: A total of 33 patient-parent dyads were enrolled and followed longitudinally. From this cohort, 17 patients experienced disease progression during the study period, most of whom were female (11 [64.7%]) and White (15 [88.2%]) individuals. For these patients, 141 disease reevaluation discussions were audio recorded, comprising 2400 minutes of medical dialogue. Most children (14 [82.4%]) died during the study period. A median of 7 disease reevaluation discussions per patient (range, 1-19) were recorded. Content analysis yielded 28 unique concepts associated with therapeutic alliance fostered by oncologist communication. Ultimately, 7 core themes emerged to support a framework for clinician approaches associated with optimizing therapeutic alliance: human connection, empathy, presence, partnering, inclusivity, humor, and honesty. Conclusions and Relevance: In this qualitative study, pediatric oncologists used diverse communication approaches associated with building and deepening connections across advancing illness. These findings offer a framework to support clinical and research strategies for strengthening therapeutic alliance among pediatric oncologists, patients, and families.
Identifier
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<a href="http://doi.org/10.1001/jamanetworkopen.2021.20925" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2021.20925</a>
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2021
2021 Special Edition - Oncology
Andes K
Baker JN
JAMA Network Open
Kaye EC
Lemmon ME
Mack JW
Oncology
Rockwell S
Woods C
-
Dublin Core
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Title
A name given to the resource
Oncology
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 2017 List
URL Address
<a href="http://doi.org/10.1200/JCO.2017.73.1356" target="_blank" rel="noreferrer">http://doi.org/10.1200/JCO.2017.73.1356</a>
Dublin Core
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Title
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Pediatric palliative oncology: Bridging silos of care through an embedded model
Publisher
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Journal Of Clinical Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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Cancer Palliative Therapy; Childhood Cancer; Cancer Diagnosis; Child; Child Health Care; Health Care Access; Health Care Delivery; Health Care Quality; Home Care; Human; Note; Patient Care; Priority Journal
Creator
An entity primarily responsible for making the resource
Kaye EC; Snaman JM; Baker JN
Identifier
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<a href="http://doi.org/10.1200/JCO.2017.73.1356" target="_blank" rel="noreferrer">10.1200/JCO.2017.73.1356</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
Baker JN
Cancer Diagnosis
Cancer Palliative Therapy
Child
Child Health Care
Childhood Cancer
Health Care Access
Health Care Delivery
Health Care Quality
Home Care
Human
Journal Of Clinical Oncology
Kaye EC
Note
Oncology 2017 List
Patient Care
Priority Journal
Snaman JM
-
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/10.1016/j.jpainsymman.2020.12.003" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2020.12.003</a>
Dublin Core
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Title
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The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review
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
The topic of the resource
Oncology
Creator
An entity primarily responsible for making the resource
Kaye EC; Weaver MS; DeWitt LH; Byers E; Stevens SE; Lukowski J; Shih B; Zalud K; Applegarth J; Wong HN; Baker JN; Ullrich CK; Committee Aahpm Research
Description
An account of the resource
CONTEXT: Children with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric palliative care (SPPC) is associated with improved outcomes for children with cancer and their families is unknown. OBJECTIVE: We conducted a systematic review following PRISMA guidelines to investigate outcomes associated with SPPC in pediatric oncology with a focus on intervention delivery, collaboration, and alignment with National Quality Forum domains. METHODS: We searched PubMed, Embase, Scopus, Web of Science, and CINAHL databases from inception until April 2020 and reviewed references manually. Eligible articles were published in English, involved pediatric patients aged 0-18 years with cancer, and contained original data regarding patient and family illness and end-of-life experiences, including symptom management, communication, decision-making, quality of life, satisfaction, and healthcare utilization. RESULTS: We screened 6682 article abstracts and 82 full-text articles; 32 studies met inclusion criteria, representing 15,635 unique children with cancer and 342 parents. Generally, children with cancer who received SPPC had improved symptom burden, pain control, and quality of life with decreased intensive procedures, increased completion of advance care planning and resuscitation status documentation, and fewer end-of-life intensive care stays with higher likelihood of dying at home. Family impact included satisfaction with SPPC and perception of improved communication. CONCLUSION: SPPC may improve illness experiences for children with cancer and their families. Multisite studies utilizing comparative effectiveness approaches and validated metrics may support further advancement of the field.
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.12.003" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.12.003</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
Applegarth J
Baker JN
Byers E
Committee Aahpm Research
DeWitt LH
Journal of Pain and Symptom Management
Kaye EC
Lukowski J
Oncology
Shih B
Stevens SE
Ullrich CK
Weaver MS
Wong HN
Zalud K
-
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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/10.1038/s41416-021-01512-9" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1038/s41416-021-01512-9</a>
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Title
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Communication around Palliative Care Principles and Advance Care Planning Between Oncologists, Children with Advancing Cancer and Families
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British Journal of Cancer
Date
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2021
Subject
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Oncology
Creator
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Kaye EC; Woods C; Kennedy K; Velrajan S; Gattas M; Bilbeisi T; Huber R; Lemmon ME; Baker JN; Mack JW
Description
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BACKGROUND: In medical oncology, palliative care principles and advance care planning are often discussed later in illness, limiting time for conversations to guide goal-concordant care. In pediatric oncology, the frequency, timing and content of communication about palliative care principles and advance care planning remains understudied. METHODS: We audio-recorded serial disease re-evaluation conversations between oncologists, children with advancing cancer and their families across the illness trajectory until death or 24 months from last disease progression. Content analysis was conducted to determine topic frequencies, timing and communication approaches. RESULTS: One hundred forty one disease re-evaluation discussions were audio-recorded for 17 patient-parent dyads with advancing cancer. From 2400 min of recorded dialogue, 119 min (4.8%) included discussion about palliative care principles or advance care planning. Most of this dialogue occurred after frank disease progression. Content analysis revealed distinct communication approaches for navigating discussions around goals of care, quality of life, comfort and consideration of limiting invasive interventions. CONCLUSIONS: Palliative care principles are discussed infrequently across evolving illness for children with progressive cancer. Communication strategies for navigating these conversations can inform development of educational and clinical interventions to encourage earlier dialogue about palliative care principles and advance care planning for children with high-risk cancer and their families.
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<a href="http://doi.org/10.1038/s41416-021-01512-9" target="_blank" rel="noreferrer noopener">10.1038/s41416-021-01512-9</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
Baker JN
Bilbeisi T
British Journal Of Cancer
Gattas M
Huber R
Kaye EC
Kennedy K
Lemmon ME
Mack JW
Oncology
Velrajan S
Woods C
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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2021 Special Edition 2 - Oncology
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
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.29270" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.29270</a>
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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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Broaching Goals-Of-Care Conversations in Advancing Pediatric Cancer
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Pediatric Blood and Cancer
Date
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2021
Subject
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Oncology
Creator
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Kaye EC; Woods C; Velrajan S; Lemmon ME; Baker JN; Mack JW
Description
An account of the resource
Broaching conversations about goals of care can be difficult for clinicians. Presently, the communication strategies used by pediatric oncologists to approach goals of care conversations are not well understood. We recorded disease re-evaluation conversations between pediatric oncologists, patients, and parents, capturing 141 conversations (∼2400 minutes) for 17 patients with advancing illness across the study period. We conducted content analysis to identify strategies for broaching goals-of-care conversations and found five distinct communication approaches, which were not mutually exclusive. Further research is needed to explore patient and family views on best practices for broaching discussions about goals of care.
Identifier
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<a href="http://doi.org/10.1002/pbc.29270" target="_blank" rel="noreferrer noopener">10.1002/pbc.29270</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
Baker JN
Kaye EC
Lemmon ME
Mack JW
Oncology
Pediatric Blood & Cancer
Velrajan S
Woods C
-
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/10.12788/j.suponc.0012" target="_blank" rel="noreferrer">http://doi.org/10.12788/j.suponc.0012</a>
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Title
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Best practices for pediatric palliative cancer care: a primer for clinical providers
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The Journal Of Supportive Oncology
Date
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2013
Creator
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Levine D; Lam CG; Cunningham MJ; Remke S; Chrastek J; Klick J; Macauley R; Baker JN
Description
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Cancer is the leading cause of disease-related death in children and adolescents. Pediatric patients with cancer suffer greatly at the end of life. However, palliative care interventions can reduce suffering and significantly improve the care of these patients and their families. A large percentage of pediatric deaths occur outside of the hospital setting where pediatric palliative resources may not be readily available. Patients in the home setting may be cared for by community hospice programs, which are typically staffed for adult populations. Increasingly, nonpediatric providers are asked to provide palliative care for children and adolescents at the end of life, yet they receive little formal training in this area. This review focuses on the principles of best practice in the provision of palliative care for children and adolescents with cancer. Our intent is to aid clinical providers in delivering optimal care to this patient population. Topics unique to pediatric palliative care that are addressed include: providing pain and symptom management in the broad pediatric range from neonate to adolescent; caring for and interacting with developmentally distinct groups; engaging in shared decision making with parents and adolescents; providing accommodations for prognoses that are often more uncertain than in adult patients; and delivering concurrent disease-directed therapy with palliative care.
2013-09
Identifier
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<a href="http://doi.org/10.12788/j.suponc.0012" target="_blank" rel="noreferrer">10.12788/j.suponc.0012</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
2013
Backlog
Baker JN
Chrastek J
Cunningham MJ
Journal Article
Klick J
Lam CG
Levine D
Macauley R
Remke S
The Journal Of Supportive Oncology