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Dublin Core
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Title
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August 2021 List
Text
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Citation List Month
August 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.07.042" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.07.042</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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To Disclose or Not to Disclose: A Case Highlighting the Challenge of Conflicts in Pediatric Disclosure
Publisher
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Journal of Pain and Symptom Management
Date
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2021
Subject
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Child; Humans; Bereavement; Pediatric oncology; Disclosure; Grief; End-of-life; Disclosure of information; Family caregiver
Creator
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Martinez I; Hoppmann A; Perna S; Byrd P; Wolfe J; Aye J; Johnston EE
Description
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Owing to differences in opinion about patient autonomy and perceived maturity, discussing diagnosis and prognosis with children can be challenging. Shifting away from “never tell” and “always tell” approaches, recent articles have championed more nuanced case-by-case approaches to disclosure of information to children. 1234 Here we present the case of Ari (names have been changed for confidentiality), a 10-year-old female with metastatic NUT (nuclear protein of the testis) carcinoma—a rare and aggressive tumor with poor prognosis, 5 , 6 —whose medical course was complicated by parental wishes to withhold diagnostic and prognostic information from their daughter. Coupled with an interview (for an unrelated, institutional review board–approved research study) with Ari's mother 9 months after her daughter's death, the medical team's experience highlights the complexity of navigating care for families who desire to withhold medical information from their child. We use this case as an opportunity to discuss the current literature on child and young adolescent preferences for disclosure of information and highlight existing guidelines around pediatric disclosure that can help clinicians when there are disagreements about pediatric disclosure.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.07.042" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.07.042</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).
2021
August 2021 List
Aye J
Bereavement
Byrd P
Child
Disclosure
Disclosure of information
end-of-life
family caregiver
Grief
Hoppmann A
Humans
Johnston EE
Journal of Pain and Symptom Management
Martinez I
Pediatric Oncology
Perna S
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
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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“when I Heard Palliative Care, I Heard Hospice”: Parents’ Experiences With Pediatric Palliative Care Consultation In The Neonatal Intensive Care Unit
Publisher
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Journal Of Pain And Symptom Management
Date
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2016
Creator
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Currie E; Bakitas M; Perna S; Christian B; Meneses K
Description
An account of the resource
Objectives
Describe the role of pediatric palliative care
consultation in the neonatal intensive care unit
(NICU) setting.
Describe parent experiences with a pediatric palliative
care consultation in the NICU and implications
for practice and further research efforts.
Background. In 2013, 23,440 infants died in the US;
most deaths occurred in the first 28 days of life. Pediatric
palliative care consultation (PPC) in the neonatal
intensive care unit (NICU) may provide much needed
support for these infants and parents. Early in the critical
illness trajectory, PPC may assist with parental decision-making.
However, there is a paucity of research
on parental perceptions of PPC and why these services
may be underused in the NICU until death is
imminent.
Research Objectives. To describe parents’ experiences
with a PPC prior to their infant’s death in the
NICU.
Methods. In this descriptive qualitative study, we conducted
individual audio-recorded, semi-structured interviews
with a convenience sample of parents
(N¼10) from a children’s hospital in the Southeastern
US approximately four years after infant death. Upon
reaching thematic saturation, verbatim transcribed interviews
were verified for accuracy, coded, and content
analyzed using qualitative descriptive methods. We
used member-checking to enhance trustworthiness
of the findings.
Results. Six of 10 parents had formal PPC. Most PPC
occurred near the end of life, and parents’ reported
‘‘negative connotations’’ associated with the consult
initially, such as losing hope of curative treatment.
However, all parents who received PPC would recommend
this service to other parents and found PPC as
a helpful layer of support. Specific positive experiences
included: feeling like they had an extra advocate,
a non-judgmental sounding board, and
‘‘another support branch.’’
Conclusions. PPC is often not considered until very
near death, and parents’ identified PPC as a marker
of transition from curative to end-of-life care. Nevertheless,
parents found PPC to be valuable and would
recommend it to other parents.
Implications for Research, Policy or
Practice. Further research is necessary to understand
the factors that influence parental perceptions of PPC
and how to identify opportunities for earlier PPC integration
in the NICU.
Identifier
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DOI: http://dx.doi.org/10.1016/j.jpainsymman.2015.12.051
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
Bakitas M
Christian B
Currie E
Journal of Pain and Symptom Management
March 2016 List
Meneses K
Perna S