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Text
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Citation List Month
March 2016 List
Dublin Core
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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
-
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 2019 List
Text
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Citation List Month
February 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.417" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.417</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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Neonatal Palliative Care in the United States Deep South: Exploration of Patterns of Care and Health Disparities
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
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infant; newborn; Mississippi; terminal care; palliative therapy; major clinical study; neonatal intensive care unit; conference abstract; medical record review; human; child; female; male; controlled study; resuscitation; statistics; chi square test; Alabama; health disparity; Louisiana; race
Creator
An entity primarily responsible for making the resource
Currie E; Boss R; Wolfe J; Dionne-Odom JN; Ejem D; Bakitas M
Description
An account of the resource
Background: In 2013, 23,446 infants died in the U.S.. For infants hospitalized in the neonatal intensive care unit (NICU), advances in medicine have prolonged the lives of many infants who would not have previously survived, resulting in complex clinical scenarios that would benefit from the integration of pediatric palliative care (PPC). PPC is an interdisciplinary specialty that aims to provide the best possible quality of life for seriously ill infants and their families and involves comprehensive treatment of suffering. However, PPC is often underutilized in the NICU, integrated too late in the illness for the patient and family to fully benefit from PPC, or avoided completely. Access to palliative care in the U.S. varies across regions, with limited access to PPC in the Deep South. However, patterns of neonatal palliative care and the extent of disparities within neonatal PPC throughout the Deep South is unknown.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.417" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.417</a>
2018
Alabama
Bakitas M
Boss R
Chi Square Test
Child
conference abstract
Controlled Study
Currie E
Dionne-Odom JN
Ejem D
February 2019 List
Female
health disparity
Human
Infant
Journal of Pain and Symptom Management
Louisiana
Major Clinical Study
Male
Medical Record Review
Mississippi
Neonatal Intensive Care Unit
Newborn
Palliative Therapy
race
Resuscitation
Statistics
Terminal Care
Wolfe J