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Text
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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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ISSN
1873-6513 0885-3924
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<a href="http://neomed.idm.oclc.org/login?url=http://doi.org/10.1016/j.jpainsymman.2021.01.007" target="_blank" rel="noreferrer noopener">NEOMED Full-text Holding (if available) - Proxy DOI: 10.1016/j.jpainsymman.2021.01.007</a>
<p>Users with a NEOMED Library login can search for full-text journal articles at the following url: <a href="https://libraryguides.neomed.edu/home">https://libraryguides.neomed.edu/home</a></p>
Update Year & Number
February 2021 List
NEOMED Department
NEOMED College of Medicine
Affiliated Hospital
Akron Children's Hospital
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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Prioritization of Pediatric Palliative Care Field-Advancement Activities in the United States: Results of a National Survey.
Date
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2021
2021-01-21
Subject
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curriculum; financing; funding; palliative care; pediatric; quality of health care
Creator
An entity primarily responsible for making the resource
Feudtner Chris;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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journalArticle
Publisher
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Journal Of Pain And Symptom Management
2021
Akron Children's Hospital
Baker JN
Bowman BA
Curriculum
Department of Pediatrics
Faerber JA
February 2021 List
Feudtner Chris
Financing
Friebert S
funding
Journal of pain and symptom management
journalArticle
Kobler K
NEOMED College of Medicine
Palliative Care
Pediatric
Quality of Health Care
Rosenberg AR
Wolfe J
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Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1002/pbc.28599" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.28599</a>
Pages
e28599
ISSN
1545-5009
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Locate full-text within NEOMED Library's e-journal collections
<a href="http://neomed.idm.oclc.org/login?url=http://doi.org/10.1002/pbc.28599" target="_blank" rel="noreferrer noopener">NEOMED Full-text Holding (if available) - Proxy DOI: 10.1002/pbc.28599</a>
<p>Users with a NEOMED Library login can search for full-text journal articles at the following url: <a href="https://libraryguides.neomed.edu/home">https://libraryguides.neomed.edu/home</a></p>
Update Year & Number
August 2020 List
NEOMED College
NEOMED College of Medicine
NEOMED Department
Department of Family & Community Medicine
Department of Pediatrics
Affiliated Hospital
Akron Children's Hospital
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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"Living life as if i never had cancer": A study of the meaning of living well in adolescents and young adults who have experienced cancer
Publisher
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Pediatric Blood & Cancer
Subject
The topic of the resource
childhood; definition; quality of life; advance care planning; cancer; adolescent; advance care
Creator
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Schreiner K; Grossoehme DH; Friebert S; Baker JN; Needle J; Lyon ME
Description
An account of the resource
Background Cancer diagnoses pose challenges to adolescents' and young adults' (AYA) physical, mental, and emotional health, and developmental tasks. In order for AYAs, caregivers, clinicians, and other collaborators to optimize health outcomes (coproduction of health), understanding what living well means for AYAs who have experienced cancer is necessary. The objective was to develop an empirical definition of "living well" for AYAs who have experienced cancer to broadly understand AYA values and priorities. This definition may ultimately guide future conversations between caregivers and AYAs, eliciting thorough, personal definitions of living well from individual AYAs. Such conversations may enhance AYA participation in coproducing their health. Procedure Qualitative analysis using a phenomenological approach of N = 30 structuredRespecting Choicesinterviews conducted with AYAs (14-21 years; mean 84.2 [SD 69] months postcancer diagnosis with 21% on active treatment) from four tertiary pediatric hospitals in the context of a primary study of a pediatric advance care planning intervention trial. Results AYAs who have experienced cancer conceptualized "living well" as maintaining physical, mental, and emotional health, as well as engaging in purposeful, age-appropriate activities with people important to them. Living well had three components: living mindfully, living an identity as a healthy AYA, and spending time with friends and family. Conclusions Conversations with AYAs who have experienced cancer elicited rich, complex concepts of "living well." Provider initiation of discussions about living well may facilitate personalized goals of care conversations. This study may serve as the basis to design and prototype future clinical interventions to enhance AYA engagement.
Identifier
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<a href="http://doi.org/10.1002/pbc.28599" target="_blank" rel="noreferrer noopener">10.1002/pbc.28599</a>
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Article information provided for research and reference use only. All rights are retained by the journal listed under publisher and/or the creator(s).
Format
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journalArticle
Adolescent
advance care
advance care planning
Akron Children's Hospital
August 2020 List
Baker JN
Cancer
childhood
definition
Department of Family & Community Medicine
Department of Pediatrics
Friebert S
Grossoehme DH
journalArticle
Lyon ME
Needle J
NEOMED College of Medicine
Pediatric blood & cancer
Quality of Life
Schreiner K