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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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March 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
March 2021 List
URL Address
<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>
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
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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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>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
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
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1097/NMC.0000000000000028" target="_blank" rel="noreferrer">http://doi.org/10.1097/NMC.0000000000000028</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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Leaning in and holding on: team support with unexpected death
Publisher
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The American Journal Of Maternal Child Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
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bereavement; team support
Creator
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Kobler K
Description
An account of the resource
Integral to the care of medically fragile infants and children is the sobering reality that not all will survive. Supporting children and families through the dying process requires knowledge, skill, compassion, and a willingness to be present to the suffering of others. As healthcare professionals journey with a dying child, they experience an ongoing dual nature of their own grief, shifting between focusing on the loss at hand or avoiding the loss and refocusing their attention elsewhere. This internal conflict may be potentiated with the sudden, unexpected death of a patient, which affords little time for caregivers to process their own experience of the loss. When an unanticipated death occurs, a palpable grief ripples through the entire unit, impacting caregivers, the bereaved parents, and other patients and families. Such an event holds the potential for either team disorganization or growth. This article presents a case study of one unit's response to the unexpected death of a long-term patient, which caused caregivers to lean in to support each other. Using a case study approach, the author identifies strategies to best guide teams when death arrives without warning, and provides ideas for cocreating ritual to honor relationship in the midst of tragedy.
2014-06
Identifier
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<a href="http://doi.org/10.1097/NMC.0000000000000028" target="_blank" rel="noreferrer">10.1097/NMC.0000000000000028</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
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Journal Article
2014
Backlog
Bereavement
Journal Article
Kobler K
team support
The American Journal Of Maternal Child Nursing
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2016 List
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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Bereaved Parents Experience Of A Hospital Memorial Service
Publisher
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Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
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Kobler K; Barnes M
Description
An account of the resource
Objectives
Understand reasons a bereaved parent chooses to
return to the hospital for a memorial service.
Identify elements of a hospital memorial service
that parents identify as most beneficial.
Original Research Background. 77% of children’s
hospitals participating in a palliative care survey reported
offering a hospital-based memorial service
(Feudtner, 2013), yet little is known about bereaved
parents’ experiences of attending such a service.
Research Objectives. This paper reports preliminary
findings from an exploratory, qualitative study
to understand: why bereaved parents choose to attend
a memorial service, what service elements parents
consider most/least beneficial, and how a hospital memorial
service can best meet bereaved parents’ needs.
Methods. Parents experiencing a perinatal, neonatal,
or pediatric death, and attending one of three yearly
hospital-based memorial services, were invited to
participate (Current n¼15). In-person, semi-structured
interviews were conducted within one month
of memorial service attendance by a chaplain
researcher trained in supporting bereaved families; interviews
were recorded and transcribed verbatim.
Each interview was coded by two members of the interdisciplinary
research team using Atlas.ti7 for data
management. Thematic analysis was applied to each
final coded transcript, followed by analysis matrices
development to look at major themes across parent
interviews.
Results. This study is in the last phase of data collection,
with final analysis projected by December, 2015.
Emerging themes from 15 completed interviews
include: a sense of community with fellow bereaved
parents and the importance of others joining the parents
in remembering their child through ritual.
Conclusion. Bereaved parents who return to the hospital
for a memorial service value the opportunity to
honor their child in a supportive setting. Parents
report finding comfort in connecting to their child
through memorial service ritual.
Implications for Research, Policy or
Practice. Future research is needed to understand
the ongoing impact of memorial service attendance
on bereaved parents, including rituals they may
choose to adopt or continue after returning home.
Children’s hospitals are encouraged to establish or
further refine memorial services in support of grieving
parents.
Feudtner, et al. (2013). Pediatric palliative care
programs in children’s hospitals. Pediatrics, 132(6),
1063-1070.
Identifier
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DOI: http://dx.doi.org/10.1016/j.jpainsymman.2015.12.029
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Barnes M
Journal of Pain and Symptom Management
Kobler K
March 2016 List