1
40
14
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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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February 2024 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
February List 2024
URL Address
<a href="http://doi.org/10.1016/j.cppeds.2023.101551" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.cppeds.2023.101551</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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Shared decision-making in pediatric palliative care
Publisher
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Current Problems in Pediatric and Adolescent Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Parents; End-of-life care; Palliative care; Shared decision-making
Creator
An entity primarily responsible for making the resource
Stroh JT; Carter BS
Description
An account of the resource
Shared decision-making (SDM) with parents and adolescents is normative in pediatric practice in North America. In this article we discuss how it is applicable to the practice of pediatric palliative care (PPC). As PPC itself is exemplary of patient-and-family-centered care, it often uses a SDM approach in clarifying patient and family preferences, goals, and values. This often occurs in an iterative process and across care environments, wherein the patient and family narrative is elaborated. Decisions are then made incorporating both evidence-based medical practice and the unique attributes and considerations of the patient and family.
Identifier
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<a href="http://doi.org/10.1016/j.cppeds.2023.101551" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2023.101551</a>
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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).
2023
Carter BS
Current Problems in Pediatric and Adolescent Health Care
End-of-life Care
February List 2024
Palliative Care
Parents
Shared Decision-making
Stroh JT
-
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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2023 Special Edition 5 - Low Resource Setting 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
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.3389/fped.2023.1217209" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fped.2023.1217209</a>
Dublin Core
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Title
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Perinatal palliative care in sub-Saharan Africa: recommendations for practice, future research, and guideline development
Publisher
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Frontiers in Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Palliative Care; neonatal intensive care; perinatal palliative care; neonatal end-of-life care; Africa South of the Sahara; low-middle-income-countries; newborn bereavement; sub-saharan Africa
Creator
An entity primarily responsible for making the resource
Abayneh M; Rent S; Ubuane PO; Carter BS; Deribessa SJ; Kassa BB; Tekleab AM; Kukora SK
Description
An account of the resource
Worldwide, sub-Saharan Africa has the highest burden of global neonatal mortality (43%) and neonatal mortality rate (NMR): 27 deaths per 1,000 live births. The WHO recognizes palliative care (PC) as an integral, yet underutilized, component of perinatal care for pregnancies at risk of stillbirth or early neonatal death, and for neonates with severe prematurity, birth trauma or congenital anomalies. Despite bearing a disproportionate burden of neonatal mortality, many strategies to care for dying newborns and support their families employed in high-income countries (HICs) are not available in low-and-middle-income countries (LMICs). Many institutions and professional societies in LMICs lack guidelines or recommendations to standardize care, and existing guidelines may have limited adherence due to lack of space, equipment, supplies, trained professionals, and high patient load. In this narrative review, we compare perinatal/neonatal PC in HICs and LMICs in sub-Saharan Africa to identify key areas for future, research-informed, interventions that might be tailored to the local sociocultural contexts and propose actionable recommendations for these resource-deprived environments that may support clinical care and inform future professional guideline development.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3389/fped.2023.1217209" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1217209</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).
2023
2023 SE5 - Low Resource Setting
Abayneh M
Africa South of the Sahara
Carter BS
Deribessa SJ
Frontiers in Pediatrics
Kassa BB
Kukora SK
low-middle-income-countries
neonatal end-of-life care
neonatal intensive care
newborn bereavement
Palliative Care
Perinatal Palliative Care
Rent S
Sub-Saharan Africa
Tekleab AM
Ubuane PO
-
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
January 2022 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
January 2022 List
URL Address
<a href="http://doi.org/10.1016/j.semperi.2021.151526" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.semperi.2021.151526</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
An ethical rationale for perinatal palliative care
Publisher
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Seminars in Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
end-of-life; Neonatology; Palliative Care; Ethics; Perinatal
Creator
An entity primarily responsible for making the resource
Carter BS
Description
An account of the resource
Perinatal palliative care has grown out of both an historical necessity in attending to babies in the NICU that face difficult odds of survival, the increasing technology that may avail life-extending, yet technology-dependent, care, and the growth of fetal diagnostic and treatment centers. This review looks ta the history and ethical rationale for making available services from Pediatric and Perinatal Palliative Care to families in the prenatal and postnatal periods caring for a loved one with life-limiting circumstances.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.semperi.2021.151526" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2021.151526</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
Carter BS
end-of-life
Ethics
January 2022 List
Neonatology
Palliative Care
Perinatal
Seminars in Perinatology
-
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/10.1177/1367493513516391" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493513516391</a>
Dublin Core
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Title
A name given to the resource
Being a presence': The ways in which family support workers encompass, embrace, befriend, accompany and endure with families of life-limited children
Publisher
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Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
home care services; respite service
Creator
An entity primarily responsible for making the resource
Carter BS; Edwards M; Hunt A
Description
An account of the resource
Children with life-limiting and disabling conditions are surviving longer than previously, and many require palliative and supportive care, usually at home. Home-based care can put family life under considerable strain, as parents care for their child's complex, often unpredictable, continuing care needs. Rainbow Trust Children's Charity aims to bridge gaps in services for children with life-threatening or terminal conditions by providing family support workers (FSWs). The study used a range of methods (surveys, interviews and ethnographic observation) approach to explore key aspects of the work of the FSWs. The target population for the surveys was families with a child having complex, life-threatening or terminal conditions receiving care from FSWs. The participants included 55 families (12 bereaved) and 39 children aged 2-18 years. Thematic analysis revealed how the FSWs became a presence in families' lives in three main ways: (1) encompassing and embracing families through supporting needs and promoting resilience; (2) befriending and bonding through developing knowledge, trusting relationships and a sense of closeness; and (3) accompanying and enduring by 'being with' families in different settings, situations and crises and by enduring alongside the families. The study demonstrated the fundamental importance of workers who are able to provide aspects of support that is usually not provided by other services.
2014-01
Identifier
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<a href="http://doi.org/10.1177/1367493513516391" target="_blank" rel="noreferrer">10.1177/1367493513516391</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
2014
Backlog
Carter BS
Edwards M
home care services
Hunt A
Journal Article
Journal Of Child Health Care
respite service
-
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/10.1177/1049909112460331" target="_blank" rel="noreferrer">http://doi.org/10.1177/1049909112460331</a>
<a href="http://ajh.sagepub.com.ezproxy.library.ubc.ca/content/30/6/566" target="_blank" rel="noreferrer">http://ajh.sagepub.com.ezproxy.library.ubc.ca/content/30/6/566</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
Loss in the NICU Sibling Matters
Publisher
An entity responsible for making the resource available
American Journal Of Hospice & Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
bereavement; Family; Siblings; Intensive Care; sibling bereavement; loss; Neonatal
Creator
An entity primarily responsible for making the resource
Sandler CL; Robinson E; Carter BS
Description
An account of the resource
Siblings of patients that have lengthy stays in the neonatal intensive care unit (NICU) may be affected emotionally by their brother’s or sister’s condition, separation, or even death. In an effort to assess the effect of perinatal loss on siblings a student-led inquiry was designed and tested. A scripted interview was composed to determine whether or not children were effectively processing the loss of their sibling. While a single case is reported, the methodology proved useful and opens the door to further consideration of providing sibling-oriented grief and bereavement services in the NICU.
2013-09
Identifier
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<a href="http://doi.org/10.1177/1049909112460331" target="_blank" rel="noreferrer">10.1177/1049909112460331</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
2013
American Journal of Hospice & Palliative Medicine
Backlog
Bereavement
Carter BS
Family
Intensive Care
Journal Article
Loss
Neonatal
Robinson E
Sandler CL
sibling bereavement
Siblings
-
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/10.1542/peds.2013-2731" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2013-2731</a>
<a href="http://pediatrics.aappublications.org/content/132/5/966" target="_blank" rel="noreferrer">http://pediatrics.aappublications.org/content/132/5/966</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
Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
adolescent; Child; infant; Young Adult; Palliative Care; hospice care; Pediatric; fetus; Newborn
Creator
An entity primarily responsible for making the resource
Feudtner C; Friebert SE; Jewell J; Friebert SE; Carter BS; Feudtner C; Hood M; Imaizumi S; Komatz K
Description
An account of the resource
Pediatric palliative care and pediatric hospice care (PPC-PHC) are often essential aspects of medical care for patients who have life-threatening conditions or need end-of-life care. PPC-PHC aims to relieve suffering, improve quality of life, facilitate informed decision-making, and assist in care coordination between clinicians and across sites of care. Core commitments of PPC-PHC include being patient centered and family engaged; respecting and partnering with patients and families; pursuing care that is high quality, readily accessible, and equitable; providing care across the age spectrum and life span, integrated into the continuum of care; ensuring that all clinicians can provide basic palliative care and consult PPC-PHC specialists in a timely manner; and improving care through research and quality improvement efforts. PPC-PHC guidelines and recommendations include ensuring that all large health care organizations serving children with life-threatening conditions have dedicated interdisciplinary PPC-PHC teams, which should develop collaborative relationships between hospital- and community-based teams; that PPC-PHC be provided as integrated multimodal care and practiced as a cornerstone of patient safety and quality for patients with life-threatening conditions; that PPC-PHC teams should facilitate clear, compassionate, and forthright discussions about medical issues and the goals of care and support families, siblings, and health care staff; that PPC-PHC be part of all pediatric education and training curricula, be an active area of research and quality improvement, and exemplify the highest ethical standards; and that PPC-PHC services be supported by financial and regulatory arrangements to ensure access to high-quality PPC-PHC by all patients with life-threatening and life-shortening diseases.
2013-11
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2013-2731" target="_blank" rel="noreferrer">10.1542/peds.2013-2731</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
2013
Adolescent
Backlog
Carter BS
Child
Fetus
Feudtner C
Friebert SE
Hood M
Hospice Care
Imaizumi S
Infant
Jewell J
Journal Article
Komatz K
Newborn
Palliative Care
Pediatric
Pediatrics
Young Adult
-
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/10.1177/1049909109360410" target="_blank" rel="noreferrer">http://doi.org/10.1177/1049909109360410</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
Pediatric palliative care: feedback from the pediatric intensivist community
Publisher
An entity responsible for making the resource available
The American Journal Of Hospice & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Child; Humans; United States; Intensive Care Units; Attitude of Health Personnel; Questionnaires; Attitude to Death; Professional-Family Relations; Professional Competence; Palliative Care/organization & administration; Continuity of Patient Care/organization & administration; Pediatrics/organization & administration; Pediatric/organization & administration; Terminal Care/organization & administration
Creator
An entity primarily responsible for making the resource
Jones PM; Carter BS
Description
An account of the resource
With the emergence of a more formalized field of pediatric palliative care (PPC), it is important for individuals and organizations involved in PPC to gather input from patients with life-threatening/life-limiting conditions, their families, and their health care providers. We report the results of a survey completed in late 2007 of the Section on Critical Care of the American Academy of Pediatrics (AAP). The 102 respondents provided information regarding their clinical and educational experiences, perceived barriers to the provision of palliative care in the intensive care environment, currently available PPC resources, and the usefulness of palliative care specialization in the pediatric intensive care unit.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909109360410" target="_blank" rel="noreferrer">10.1177/1049909109360410</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
2010
Attitude Of Health Personnel
Attitude To Death
Backlog
Carter BS
Child
Continuity Of Patient Care/organization & Administration
Humans
Intensive Care Units
Jones PM
Journal Article
Palliative Care/organization & Administration
Pediatric/organization & Administration
Pediatrics/organization & Administration
Professional Competence
Professional-family Relations
Questionnaires
Terminal Care/organization & Administration
The American Journal of Hospice & Palliative Care
United States
-
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/10.1053/j.semperi.2003.10.007" target="_blank" rel="noreferrer">http://doi.org/10.1053/j.semperi.2003.10.007</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
A name given to the resource
The ethics of withholding/withdrawing nutrition in the newborn
Publisher
An entity responsible for making the resource available
Seminars In Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Humans; infant; Intensive Care Units; Emotions; Pediatric Assistants; Ethics; Medical; Neonatal; Non-U.S. Gov't; Research Support; Newborn; Premature; Multi-site Ethics; Diseases; Nutritional Support/ethics
Creator
An entity primarily responsible for making the resource
Carter BS; Leuthner SR
Description
An account of the resource
The provision of nutrition and hydration to newborn infants is considered fundamental care. For premature and critically ill newborns, similar considerations generally hold true. Nutrition may be provided for these infants using assisted measures such as parenteral nutrition or tube feedings. However, for some newborn infants the provision of medically assisted nutrition may be a more complicated issue. In particular, the goals of nutrition need to be clearly elaborated for newborns with lethal conditions or for whom appropriately administered intensive care is unsuccessful in sustaining life. These infants may benefit from palliative measures of care and a limitation or withdrawal of burdensome or nonbeneficial interventions. This article explores issues pertinent to deciding and communicating the appropriate withdrawal of medically assisted nutrition and implementing palliative comfort measures.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1053/j.semperi.2003.10.007" target="_blank" rel="noreferrer">10.1053/j.semperi.2003.10.007</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).
Type
The nature or genre of the resource
Journal Article
2003
Backlog
Carter BS
Diseases
Emotions
Ethics
Humans
Infant
Intensive Care Units
Journal Article
Leuthner SR
Medical
Multi-site Ethics
Neonatal
Newborn
Non-U.S. Gov't
Nutritional Support/ethics
Pediatric Assistants
Premature
Research Support
Seminars in Perinatology
-
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/10.1542/peds.2003-0654-f" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2003-0654-f</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
Circumstances surrounding the deaths of hospitalized children: opportunities for pediatric palliative care.
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Child; Female; Hospitalization; Humans; infant; Male; Palliative Care; Terminal Care; Terminally Ill; Withholding Treatment; Hospital Mortality; Length of Stay; Longitudinal Studies; Academic Medical Centers; adolescent; Preschool; Non-U.S. Gov't; Research Support; infant; Newborn; retrospective studies; Hospitalized; Pain/diagnosis/drug therapy
Creator
An entity primarily responsible for making the resource
Carter BS; Howenstein M; Gilmer MJ; et al
Description
An account of the resource
OBJECTIVES: Little is known regarding the assessment and treatment of symptoms during end-of-life (EOL) care for children. This study was conducted to describe the circumstances surrounding the deaths of hospitalized terminally ill children, especially pain and symptom management by the multidisciplinary pediatric care team. DESIGN: Patients in the neonatal intensive care unit, pediatric critical care unit, or general pediatric units of Vanderbilt Children's Hospital who were hospitalized at the time of death, between July 1, 2000, and June 30, 2001, were identified. Children eligible for the survey had received inpatient EOL care at the hospital for at least 24 hours before death. A retrospective medical record review was completed to describe documentation of care for these children and their families during the last 72 hours of life. RESULTS: Records of children who had received inpatient EOL care were identified (n = 105). A majority (87%) of children were in an intensive care setting at the time of death. Most deaths occurred in the pediatric critical care unit (56%), followed by the neonatal intensive care unit (31%). Pain medication was received by 90% of the children in the last 72 hours of life, and 55% received additional comfort care measures. The presence of symptoms other than pain was infrequently documented. CONCLUSIONS: The duration of hospitalization for most children dying in this inpatient setting was sufficient for provision of interdisciplinary pediatric palliative care. Management of pain and other symptoms was accomplished for many children. The documentation of pain and symptom assessment and management can be improved but requires new tools.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2003-0654-f" target="_blank" rel="noreferrer">10.1542/peds.2003-0654-f</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
2004
Academic Medical Centers
Adolescent
Backlog
Carter BS
Child
et al
Female
Gilmer MJ
Hospital Mortality
Hospitalization
Hospitalized
Howenstein M
Humans
Infant
Journal Article
Length Of Stay
Longitudinal Studies
Male
Newborn
Non-U.S. Gov't
Pain/diagnosis/drug therapy
Palliative Care
Pediatrics
Preschool
Research Support
Retrospective Studies
Terminal Care
Terminally Ill
Withholding Treatment
-
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
November 2017 List
URL Address
<a href="http://pediatrics.aappublications.org/content/early/2017/08/24/peds.2017-1905" target="_blank" rel="noreferrer">http://pediatrics.aappublications.org/content/early/2017/08/24/peds.2017-1905</a>
Notes
<p>Using Smart Source Parsing<br />( (no pagination), Article Number: e20171905. Date of Publication: September 2017</p>
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
Guidance on forgoing life-sustaining medical treatment
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Apparent Life Threatening Event/th [therapy]; Life-sustaining Medical Treatment; Medical Procedures; Practice Guideline; Article; Awareness; Caregiver; Child Abuse; Child Care; Clinical Decision Making; Comatose Patient; Consensus; Consultation; Critical Illness/th [therapy]; Death; Death By Neurologic Criteria; Developmental Disorder/th [therapy]; Disease Burden; Disease Course; Ethical Decision Making; Extremely Low Gestational Age; Family Decision Making; Family Stress; Foster Care; Gestational Age; Goal Attainment; Health Belief; High Risk Population; Human; Hydration; Imminent Death; Informed Consent; Intensive Care; Interpersonal Communication; Legal Aspect; Medical Ethics; Medical Expert; Medical Information; Medically Administered Nutrition And Hydration; Medical Specialist; Neglect; Neurologic Disease/di [diagnosis]; Nutrition; Oxygenation; Pain/th [therapy]; Palliative Therapy; Patient Care Planning; Pediatrician; Priority Journal; Prognosis; Quality Of Life; Resuscitation; Shared Decision Making; Social Support; Spiritual Care; Survival; Teamwork; Terminal Care; Tissue Perfusion; Uncertain Prognosis
Creator
An entity primarily responsible for making the resource
Weise KL; Okun AL; Carter BS; Christian CW; Katz AL; Laventhal N; MacAuley RC; Moon MR; Opel DJ; Statter MB; Davies D; Dell ML; Diekema DS; Klipstein S; Elster N; Rivera F; Feudtner C; Boss RD; Hauer JM; Humphrey LM; Klick J; Linebarger JS; Parker S; Lord B; Imaizumi S; Guinn-Jones M; Flaherty EG; Gavril AR; Idzerda SM; Laskey A; Legano LA; Leventhal JM; Fortson BL; MacMillan H; Stedt E; Hurley TP
Description
An account of the resource
Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the child leads to an assessment that forgoing life-sustaining medical treatment (LSMT) is ethically supportable or advisable. Parents are given wide latitude in decision-making concerning end-of-life care for their children in most situations. Collaborative decision-making around LSMT is improved by thorough communication among all stakeholders, including medical staff, the family, and the patient, when possible, throughout the evolving course of the patient's illness. Clear communication of overall goals of care is advised to promote agreed-on plans, including resuscitation status. Perceived disagreement among the team of professionals may be stressful to families. At the same time, understanding the range of professional opinions behind treatment recommendations is critical to informing family decision-making. Input from specialists in palliative care, ethics, pastoral care, and other disciplines enhances support for families and medical staff when decisions to forgo LSMT are being considered. Understanding specific applicability of institutional, regional, state, and national regulations related to forgoing LSMT is important to practice ethically within existing legal frameworks. This guidance represents an update of the 1994 statement from the American Academy of Pediatrics on forgoing LSMT.
Identifier
An unambiguous reference to the resource within a given context
<a class="aap-doi-text" href="https://doi.org/10.1542/peds.2017-1905" target="_blank" rel="noreferrer">10.1542/peds.2017-1905</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).
2017
Apparent Life Threatening Event/th [therapy]
Article
Awareness
Boss RD
Caregiver
Carter BS
Child Abuse
Child Care
Christian CW
Clinical Decision Making
Comatose Patient
Consensus
Consultation
Critical Illness/th [therapy]
Davies D
Death
Death By Neurologic Criteria
Dell ML
Developmental Disorder/th [therapy]
Diekema DS
Disease Burden
Disease Course
Elster N
Ethical Decision Making
Extremely Low Gestational Age
Family Decision Making
Family Stress
Feudtner C
Flaherty EG
Fortson BL
Foster Care
Gavril AR
Gestational Age
Goal Attainment
Guinn-Jones M
Hauer JM
Health Belief
High Risk Population
Human
Humphrey LM
Hurley TP
Hydration
Idzerda SM
Imaizumi S
Imminent Death
Informed Consent
Intensive Care
Interpersonal Communication
Katz AL
Klick J
Klipstein S
Laskey A
Laventhal N
Legal Aspect
Legano LA
Leventhal JM
Life-sustaining Medical Treatment
Linebarger JS
Lord B
MacAuley RC
MacMillan H
Medical Ethics
Medical Expert
Medical Information
Medical Procedures
Medical Specialist
Medically Administered Nutrition And Hydration
Moon MR
Neglect
Neurologic Disease/di [diagnosis]
November 2017 List
Nutrition
Okun AL
Opel DJ
Oxygenation
Pain/th [therapy]
Palliative Therapy
Parker S
Patient Care Planning
Pediatrician
Pediatrics
Practice Guideline
Priority Journal
Prognosis
Quality Of Life
Resuscitation
Rivera F
shared decision making
Social Support
Spiritual Care
Statter MB
Stedt E
Survival
Teamwork
Terminal Care
Tissue Perfusion
Uncertain Prognosis
Weise KL
-
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
November 2017 List
Notes
<p>1878-0946<br />Marty, Colleen M<br />Carter, Brian S<br />Journal Article<br />Review<br />Netherlands<br />Semin Fetal Neonatal Med. 2017 Sep 13. pii: S1744-165X(17)30103-8. doi: 10.1016/j.siny.2017.09.001.</p>
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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Ethics and palliative care in the perinatal world
Publisher
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Seminars in Fetal and Neonatal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Counseling; Ethics; Neonatal; Palliative Care; Perinatal Decision-making
Creator
An entity primarily responsible for making the resource
Marty CM; Carter BS
Description
An account of the resource
The perinatal world is unique in its dutiful consideration of two patients along the lines of decision-making and clinical management - the fetus and the pregnant woman. The potentiality of the fetus-newborn is intertwined with the absolute considerations for the woman as autonomous patient. From prenatal diagnostics, which may be quite extensive, to potential interventions prenatally, postnatal resuscitation, and neonatal management, the fetus and newborn may be anticipated to survive with or without special needs and technology, to have a questionable or guarded prognosis, or to live only minutes to hours. This review will address the ethical ramifications for prenatal diagnostics, parental values and goals clarification, birth plans, the fluidity of decision-making over time, and the potential role of prenatal and postnatal palliative care support.
Identifier
An unambiguous reference to the resource within a given context
10.1016/j.siny.2017.09.001
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).
2017
Carter BS
Counseling
Ethics
Marty CM
Neonatal
November 2017 List
Palliative Care
Perinatal Decision-making
Seminars in Fetal and Neonatal Medicine
-
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 2017 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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Advance Care Planning: Outpatient Antenatal Palliative Care Consultation
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood. Fetal And Neonatal Edition
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Outpatients; Referral And Consultation; Adult; Advance Care Planning/organization & Administration; Female; Humans; Infant Newborn; Palliative Care/organization & Administration; Pregnancy; Prenatal Care/organization & Administration
Creator
An entity primarily responsible for making the resource
Carter BS
Description
An account of the resource
Kukora and colleagues report on their single centre study of antenatal palliative care consultation (APCC) and reveal that this practice—though applied in a limited number of cases—contributed to a greater use of postnatal palliative/comfort care regimens. Additionally, while not altering the ultimate outcome for referred fetuses/ neonates, those who received APCC often died after a shorter in-hospital course. What are we to think of such a practice? How can APCC improve patient, family and staff experiences when a grievous outcome is anticipated?
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).
2017
Adult
Advance Care Planning/organization & Administration
Archives of Disease in Childhood. Fetal and Neonatal Edition
Carter BS
Female
Humans
Infant Newborn
March 2017 List
Outpatients
Palliative Care/organization & Administration
Pregnancy
Prenatal Care/organization & Administration
Referral And Consultation
-
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
September 2017 List
URL Address
https://www.ncbi.nlm.nih.gov/pubmed/28695618
Notes
<p>Using Smart Source Parsing Jul doi: 1111/apa</p>
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
Quality Predictors Of Parental Satisfaction After Birth Of Infants With Life-limiting Conditions
Publisher
An entity responsible for making the resource available
Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Foetal Diagnosis; Life-limiting Condition; Parental Satisfaction; Perinatal Palliative Care
Creator
An entity primarily responsible for making the resource
Wool C; Kain V J; Mendes J; Carter BS
Description
An account of the resource
AIM: This study examines parental satisfaction with care received in the context of a life-limiting fetal diagnosis and subsequent birth. METHODS: Survey methods were utilized to embed the Quality Indicators (QI) and Parental Satisfaction of Perinatal Palliative Care Instrument in a survey: "The Voice of Parents". RESULTS: The web-based survey had a final sample of N=405 parent responders. Overall, parents reported satisfaction with care (80.2%; n=393). Parents satisfied with care reported higher agreement with quality indicator items for all subscales. In total, 17 items from the 41-item instrument revealed the ability to predict higher parental satisfaction when particular QI are reported. CONCLUSION: This study has led to credible insights into parental satisfaction with care given after the birth of an infant with a life-limiting condition. The findings contribute to development of a model with a good fit in ascertaining the importance of compassion, unhurried provider-patient communication and bereavement interventions. This article is protected by copyright. All rights reserved.
Identifier
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DOI: 10.1111/apa.13980
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).
2017
Acta Paediatrica
Carter BS
Foetal Diagnosis
Kain V J
Life-limiting Condition
Mendes J
Parental Satisfaction
Perinatal Palliative Care
September 2017 List
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
November 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
More Than Medication: Perinatal Palliative Care
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood. Fetal And Neonatal Edition
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Decision Making/ethics; Humans; Infant Extremely Premature; Infant Newborn; Intensive Care Units Neonatal; Maternal-fetal Relations/psychology; Palliative Care/ethics; Palliative Care/legislation & Jurisprudence; Palliative Care/psychology; Parental Consent/ethics; Parental Consent/legislation & Jurisprudence; Parental Consent/psychology; Patient Rights/ethics; Patient Rights/legislation & Jurisprudence; Perinatal Care/ethics; Perinatal Care/legislation & Jurisprudence; Perinatal Care/standards; Personhood; Professional-family Relations; Resuscitation Orders/ethics; Resuscitation Orders/legislation & Jurisprudence; Resuscitation Orders/psychology
Creator
An entity primarily responsible for making the resource
Carter BS
Description
An account of the resource
Editorial
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1111/apa.13529
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
Archives of Disease in Childhood. Fetal and Neonatal Edition
Carter BS
Decision Making/ethics
Humans
Infant Extremely Premature
Infant Newborn
Intensive Care Units Neonatal
Maternal-fetal Relations/psychology
November 2016 List
Palliative Care/ethics
Palliative Care/legislation & Jurisprudence
Palliative Care/psychology
Parental Consent/ethics
Parental Consent/legislation & Jurisprudence
Parental Consent/psychology
Patient Rights/ethics
Patient Rights/legislation & Jurisprudence
Perinatal Care/ethics
Perinatal Care/legislation & Jurisprudence
Perinatal Care/standards
Personhood
Professional-family Relations
Resuscitation Orders/ethics
Resuscitation Orders/legislation & Jurisprudence
Resuscitation Orders/psychology