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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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Special Edition #1 2022 List
Text
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Citation List Month
Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0303" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0303</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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Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care
Publisher
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Journal of Palliative Medicine
Date
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2019
Subject
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Female; Fetal mortality; hospice; Infant; mothers; Newborn; palliative care; perinatal; Perinatal Care organization & administration; prenatal; Prenatal Diagnosis; Retrospective Studies
Creator
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Kamrath HJ; Osterholm E; Stover-Haney R; George T; O'Connor-Von S; Needle J
Description
An account of the resource
BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing infant interaction with the health care system and by gaining deeper understanding of the maternal experience after being offered perinatal palliative care. METHODS: The study was conducted at a public university-based medical center in the Midwest. Phase 1 consisted of a retrospective review of electronic medical records of 27 mother-infant pairs offered perinatal palliative care, 18 of whom elected to develop a perinatal palliative care. Phase 2 consisted of a focus group and interviews of seven of the mothers. RESULTS: In the initial phase of this study, results revealed differences regarding the infant's end-of-life trajectory, including location of death, number of invasive procedures, and death in the setting of withholding versus withdrawing life-sustaining treatment. Highlighting that without a perinatal palliative care plan in place, the default treatment for infants with prenatally diagnosed life-limiting conditions is likely to be invasive and painful with often times minimal likelihood of long-term survival. Analysis of interview and focus group data revealed three themes: care, choice, and legacy. CONCLUSION: The authors used their experience with the health care system to draw implications for practice from the focus group and interview data, which care can serve to promote women feeling cared for and cared about, as well as promote opportunities for hope during a fragile pregnancy.
Identifier
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<a href="http://doi.org/10.1089/jpm.2018.0303" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0303</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).
2019
2022 Special Edition 1 - Parent Perspectives
Female
Fetal Mortality
George T
Hospice
Infant
Journal of Palliative Medicine
Kamrath HJ
Mothers
Needle J
Newborn
O'Connor-Von S
Osterholm E
Palliative Care
Perinatal
Perinatal Care organization & administration
prenatal
Prenatal Diagnosis
Retrospective Studies
Stover-Haney R
-
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
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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