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40
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Dublin Core
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Title
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Special Edition #1 2022 List
Text
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Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1097/JPN.0000000000000483" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/JPN.0000000000000483</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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Parents' Descriptions of Neonatal Palliation as a Treatment Option Prior to Periviable Delivery
Publisher
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The Journal of perinatal & neonatal nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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palliative care; neonatal intensive care; perinatal care; NICU; decision making; premature birth
Creator
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Jager S; Kavanaugh K; Hoffman S; Laitano T; Jeffries E; Tucker Edmonds B
Description
An account of the resource
During periviable deliveries, parents are confronted with overwhelming and challenging decisions. This study aimed to qualitatively explore the language that pregnant women and important others utilize when discussing palliation, or "comfort care," as a treatment option in the context of periviability. We prospectively recruited women admitted for a threatened periviable delivery (22-25 weeks) at 2 hospitals between September 2016 and January 2018. Using a semistructured interview guide, we investigated participants' perceptions of neonatal treatment options, asking items such as "How was the choice of resuscitation presented to you?" and "What were the options presented?" Conventional content analysis was used and matrices were created to facilitate using a within- and across-case approach to identify and describe patterns. Thirty women and 16 important others were recruited in total. Participants' descriptions of treatment options included resuscitating at birth or not resuscitating. Participants further described the option to not resuscitate as "comfort care," "implicit" comfort care, "doing nothing," and "withdrawal of care." This study revealed that many parents facing periviable delivery may lack an understanding of comfort care as a neonatal treatment option, highlighting the need to improve counseling efforts in order to maximize parents' informed decision-making.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/JPN.0000000000000483" target="_blank" rel="noreferrer noopener">10.1097/JPN.0000000000000483</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).
2020
2022 Special Edition 1 - Parent Perspectives
Decision Making
Hoffman S
Jager S
Jeffries E
Kavanaugh K
Laitano T
neonatal intensive care
Nicu
Palliative Care
Perinatal Care
premature birth
The Journal Of Perinatal & Neonatal Nursing
Tucker Edmonds B
-
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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October 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
October 2021 List
URL Address
<a href="http://doi.org/10.1111/ppe.12590" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/ppe.12590</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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Values clarification: Eliciting the values that inform and influence parents' treatment decisions for periviable birth
Publisher
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Paediatric and Perinatal Epidemiology
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Attitude to Health; Decision Making; Fetal Viability; Financial Stress; Parents; periviable delivery; Pilot Projects; Pregnancy; Premature Birth; Qualitative Research; Quality of Life; Religion; Resuscitation Orders; Second Trimester Pregnancy; shared decision making; Social Support; values clarification
Creator
An entity primarily responsible for making the resource
Tucker EB; Hoffman SM; Laitano T; Bhamidipalli SS; Jeffries E; Fadel W; Kavanaugh K
Description
An account of the resource
BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). OBJECTIVE: We piloted values clarification exercises to inform resuscitation decision making and qualitatively assess perceptions of QOL. METHODS: We conducted a mixed-method study of women with threatened periviable delivery (22 0/7-24 6/7 weeks) and their important others (IOs). Participants engaged in three values clarification activities as part of a semi-structured interview-(a) Card sorting nine conditions as an acceptable/unacceptable QOL for a child; (b) Rating/ranking seven common concerns in periviable decision making (scale 0-10, not at all to extremely important); and (c) "Agreed/disagreed" with six statements regarding end-of-life treatment, disability, and QOL. Participants were also asked to define "QOL" and describe their perceptions of a good and poor QOL for their child. Analysis was conducted using SAS version 9.4 and NVivo 12. RESULTS: All mild disabilities were an acceptable QOL, while two-thirds of participants considered long-term mechanical ventilation unacceptable. Although pregnant women rated "Impact on Your Physical/Mental Health" (average 5.6) and IOs rated "Financial Concerns" the highest (average 6.6), both groups ranked "Financial Concerns" as the most important concern (median 5.0 and 6.0, respectively). Most participants agreed that "Any amount of life is better than no life at all" (pregnant women 62.1%; IOs 75.0%) and disagreed that resuscitation would cause "Too much suffering" for their child (pregnant women 71.4%; IOs 80.0%). Half were familiar with the phrase "QOL". Although the majority described a good QOL in terms of emotional well-being (eg "loved", "happy", "supported"), a poor QOL was described in terms of functionality (eg "dependent" and "confined"). Additionally, financial stability emerged as a distinctive theme when IOs discussed poor QOL. CONCLUSION: The study offers important insights on parental perspectives in periviable decision making and potential values clarification tools for decision support.
Identifier
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<a href="http://doi.org/10.1111/ppe.12590" target="_blank" rel="noreferrer noopener">10.1111/ppe.12590</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).
2020
Attitude To Health
Bhamidipalli SS
Decision Making
Fadel W
fetal viability
Financial Stress
Hoffman SM
Jeffries E
Kavanaugh K
Laitano T
October 2021 List
Paediatric and Perinatal Epidemiology
Parents
periviable delivery
Pilot Projects
Pregnancy
premature birth
Qualitative Research
Quality Of Life
Religion
Resuscitation Orders
Second Trimester Pregnancy
shared decision making
Social Support
Tucker EB
values clarification
-
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.pedn.2005.03.006" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pedn.2005.03.006</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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Life support decisions for extremely premature infants: report of a pilot study
Publisher
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Journal Of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
PedPal Lit
Creator
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Kavanaugh K; Savage T; Kilpatrick S; Kimura R; Hershberger P
Identifier
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<a href="http://doi.org/10.1016/j.pedn.2005.03.006" target="_blank" rel="noreferrer">10.1016/j.pedn.2005.03.006</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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2005
2005
Backlog
Hershberger P
Journal Article
Journal of Pediatric Nursing
Kavanaugh K
Kilpatrick S
Kimura R
PedPal Lit
Savage T
-
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.pedn.2005.08.004" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pedn.2005.08.004</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
A name given to the resource
Palliative care issue
Publisher
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Journal Of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
PedPal Lit
Creator
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Bowden VR; Kavanaugh K
Identifier
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<a href="http://doi.org/10.1016/j.pedn.2005.08.004" target="_blank" rel="noreferrer">10.1016/j.pedn.2005.08.004</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
The nature or genre of the resource
Journal Article
Description
An account of the resource
2005
2005
Backlog
Bowden VR
Journal Article
Journal of Pediatric Nursing
Kavanaugh K
PedPal Lit
-
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/10.1097/00005237-200601000-00032" target="_blank" rel="noreferrer">http://doi.org/10.1097/00005237-200601000-00032</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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Extending palliative care into pregnancy and the immediate newborn period: state of the practice of perinatal palliative care
Publisher
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Journal of Perinatal & Neonatal Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Nursing; Adaptation; PedPal Lit; organization & administration; organization & administration; organization & administration Postnatal Care; Newborn Medical Futility Neonatal Nursing; organization & administration Nurse's Role Organizational Objectives Palliative Care; organization & administration Patient Care Team; organization & administration Perinatal Care; organization & administration Prenatal Diagnosis; Psychological Continuity of Patient Care/organization & administration Counseling/organization & administration Family/psychology Grief Health Services Needs and Demand Humans Infant; psychology Patient Care Planning; psychology Prenatal Care; psychology Social Support Withholding Treatment
Creator
An entity primarily responsible for making the resource
Sumner L; Kavanaugh K; Moro T
Description
An account of the resource
Many infants die immediately prior to birth or in the neonatal period; thus, it is imperative that we begin to recognize the importance of integrating palliative care into pregnancy and the immediate newborn period. While advances in perinatal care have changed the decisions parents face when they receive a diagnosis of a life-limiting or life-threatening condition, the importance of perinatal palliative care has only recently been recognized as a viable option for care. Perinatal palliative care emphasizes the importance of planning for the limited amount of time families may have with their baby. This article provides a brief overview of perinatal palliative care, with a focus on who may benefit, the goals of care, and what services are provided. There is also a review of current palliative care programs and a discussion of how nurses can become more involved in this much-needed area of infant care.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00005237-200601000-00032" target="_blank" rel="noreferrer">10.1097/00005237-200601000-00032</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).
Type
The nature or genre of the resource
Journal Article
2006
Adaptation
Backlog
Journal Article
Journal of Perinatal & Neonatal Nursing
Kavanaugh K
Moro T
Newborn Medical Futility Neonatal Nursing
Nursing
organization & administration
organization & administration Nurse's Role Organizational Objectives Palliative Care
organization & administration Patient Care Team
organization & administration Perinatal Care
organization & administration Postnatal Care
organization & administration Prenatal Diagnosis
PedPal Lit
Psychological Continuity of Patient Care/organization & administration Counseling/organization & administration Family/psychology Grief Health Services Needs and Demand Humans Infant
psychology Patient Care Planning
psychology Prenatal Care
psychology Social Support Withholding Treatment
Sumner L
-
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
October 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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A Survey Of Perinatal Palliative Care Programs In The United States: Structure, Processes, And Outcomes.
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
2016
Subject
The topic of the resource
Fetal-abnormality; Hospice; Services; Quality Indicators; Infant; Diagnosis; Science; Health Care Sciences & Services
Creator
An entity primarily responsible for making the resource
Denney-Koelsch E; Black BP; Cote-Arsenault D; Wool C; Kim S; Kavanaugh K
Description
An account of the resource
BACKGROUND:
Perinatal palliative care (PPC) programs are proliferating nationwide, but little is known about their structure, process, or desired outcomes, to inform future program development.
OBJECTIVE:
To explicate structure, processes, and outcomes of PPC programs, specifically how they coordinate care and manage goals of care meetings, as well as providers' perceptions of the most beneficial components of care and their expected care outcomes.
DESIGN:
Free-text response data were taken from a 48-item online survey organized around the eight domains defined by the National Consensus Project for Quality Palliative Care (NCP). Responses related to NCP Domain 1 (Structure and Process of Care) were analyzed using conventional content analysis.
SUBJECTS:
U.S. PPC program representatives (N = 75) from 30 states.
RESULTS:
The majority of programs have a care coordinator, but roles vary from direct patient care to program administration. Participants described a range of topics discussed during family meetings to determine parental goals across the perinatal period. Support and respect for parent preferences and choices were the most important components of care. Desired program outcomes include parental satisfaction with physical and psychosocial support, help with the decision-making process, opportunity to parent their infant, infant comfort, and positive personal and family growth.
CONCLUSIONS:
While PPC programs do not often measure quality, their goals are family centered, with a focus on parent satisfaction with decision making and psychosocial support. PPC programs coordinate interdisciplinary care by arranging meetings and advocating for families. More research is needed to understand parent perspectives on care provided.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1089/jpm.2015.0536
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).
2016
Black BP
Côté-Arsenault D
Denney-Koelsch E
Diagnosis
Fetal-abnormality
Health Care Sciences & Services
Hospice
Infant
Journal of Palliative Medicine
Kavanaugh K
Kim S
October 2016 List
Quality Indicators
Science
Services
Wool 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
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
A name given to the resource
Provision Of Services In Perinatal Palliative Care: A Multicenter Survey In The United States.
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
2016
Subject
The topic of the resource
Bereavement; Critical Care/organization & Administration; Cross-sectional Studies; Female; Fetal Mortality; Humans; Infant Newborn; Palliative Care/organization & Administration; Parents/psychology; Perinatal Care/organization & Administration; Pregnancy; Professional-family Relations; Surveys And Questionnaires; United States
Creator
An entity primarily responsible for making the resource
Wool C; Cote-Arsenault D; Perry Black B; Denney-Koelsch E; Kim S; Kavanaugh K
Description
An account of the resource
BACKGROUND:
Congenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy affected by a life-limiting diagnosis.
OBJECTIVE:
To examine characteristics of programs and services provided, assess alignment with the National Consensus Project domains of care, and identify providers and disciplines involved in programs.
DESIGN:
A cross-sectional survey design included 48 items addressing funding and domains of quality care.
SUBJECTS:
Program representatives from 30 states (n = 75).
PRINCIPAL RESULTS:
Perinatal palliative care programs are housed in academic medical centers, regional or community hospitals, local hospices, or community-based organizations. Significant differences by program setting were observed for type of fetal diagnoses seen, formal training in communicating bad news to parents, mechanisms to ensure continuity of care, and reimbursement mechanisms. One hundred percent of programs provided attention to spiritual needs and bereavement services; 70% of programs are less than 10 years old. Follow-up with parents to assess whether goals were met occurs at 43% of the perinatal palliative care programs. Formal measures of quality assessment were articulated in 38% of programs.
CONCLUSION:
This study dramatically adds to the literature available on perinatal palliative care program settings, types, and domains of care. It is clear that there are a variety of types of programs and that the field is still developing. More work is needed to determine which quality measures are needed to address perinatal care needs in this population.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1089/jpm.2015.0266
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).
2016
Bereavement
Côté-Arsenault D
Critical Care/organization & Administration
Cross-sectional Studies
Denney-Koelsch E
Female
Fetal Mortality
Humans
Infant Newborn
Journal of Palliative Medicine
Kavanaugh K
Kim S
March 2016 List
Palliative Care/organization & Administration
Parents/psychology
Perinatal Care/organization & Administration
Perry Black B
Pregnancy
Professional-family Relations
Surveys And Questionnaires
United States
Wool C