1
40
247
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Title
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March 2024 List
Text
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March List 2024
URL Address
<a href="http://doi.org/10.1097/NJH.0000000000000985" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/NJH.0000000000000985</a>
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Title
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Palliative Care for Infants in the Neonatal Intensive Care Unit: A Scoping Review
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Journal of Hospice and Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
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hospice care; nursing care; child parent relation; human; infant; Infant; Infant Newborn; Intensive Care Units; neonatal intensive care unit; newborn; Palliative Care; palliative therapy; psychology
Creator
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Kim ES; Kim S; Ahn SY; Lee H
Description
An account of the resource
This scoping review aimed to explore the characteristics of neonatal palliative care in the neonatal intensive care unit, including the features, contents, and experiences of infants, parents, and nurses during palliative care. Five databases (PubMed, Cochrane, CINAHL, Research Information Sharing Service, and Korean Studies Information Service System) were searched to identify relevant articles published between 2011 and 2020. From the systematic search and review process, 13 studies that met the eligibility criteria were selected for the analysis. From the literature review, 2 key principles were found to facilitate neonatal palliative care: family-centered care and integrative care in the neonatal intensive care unit. In addition, the themes found in this review included (1) providing comfortable care to dying infants with respect to infants and offering parents choices, (2) therapeutic communication, (3) support with respect, and (4) bereavement care for parents of dying infants in the neonatal intensive care unit. Caregivers require effective communication, manpower support, emotional support, educational programs, and well-defined protocols. The evidence mapped and synthesized in this review indicates the need to facilitate the provision of palliative care in the neonatal intensive care unit in line with the unique needs of infants, parents, and nurses.
Identifier
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<a href="http://doi.org/10.1097/NJH.0000000000000985" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000985</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).
2024
Ahn SY
Child Parent Relation
Hospice Care
Human
Infant
Infant Newborn
Intensive Care Units
Journal of Hospice and Palliative Nursing
Kim ES
Kim S
Lee H
March List 2024
Neonatal Intensive Care Unit
Newborn
Nursing Care
Palliative Care
Palliative Therapy
Psychology
-
Dublin Core
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Title
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March 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
March List 2024
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Title
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Family-Centered Culture Care: Touched by an Angel
Publisher
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Journal of Clinical Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
ethics; mental stress; morality; psychology; religion; attitude to death; child; cultural anthropology; empathy; ethnology; family nursing; Hinduism; human; human relation; Impatiens; infant; newborn; nursing staff; Touch; treatment refusal
Creator
An entity primarily responsible for making the resource
Hernandez JA
Description
An account of the resource
An Asian Indian Hindu family chose no intervention and hospice care for their newborn with hypoplastic right heart syndrome as an ethical option, and the newborn expired after five days. Professional nursing integrates values-based practice and evidence-based care with cultural humility when providing culturally responsive family-centered culture care. Each person's worldview is unique as influenced by culture, language, and religion, among other factors. The Nursing Team sought to understand this family's collective Indian Hindu worldview and end-of-life beliefs, values, and practices, in view of the unique aspects of the situation while the team integrated evidence-based strategies to provide family-centered culture care. Parental care choices conflicted with those of the Nursing Team, and some nurses experienced moral distress and cultural dissonance when negotiating their deeply held cultural and religious views to advocate for the family. The inability to reconcile and integrate a stressful or traumatic experience impacts nurses' well-being and contributes to compassion fatigue. Nurses need to be intentional in accessing interventions that promote coping and healing and moral resilience. Reflection and cultural humility, assessment, and knowledge in context, increase evidence-based culture care and positive outcomes. U.S. society's views on ethical behavior continue to evolve, and some may argue that the law should place more limits on parents' right to choose or to refuse treatment for their infants and children. Moral distress can lead to moral resilience and satisfaction of compassion when nurses provide family-centered culture care with cultural responsiveness and integrate values-based practice with evidence-based care, and aim to first do no harm.
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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).
2019
Attitude To Death
Child
cultural anthropology
Empathy
Ethics
ethnology
Family Nursing
Hernandez JA
Hinduism
Human
Human Relation
Impatiens
Infant
Journal of Clinical Ethics
March List 2024
Mental Stress
Morality
Newborn
Nursing Staff
Psychology
Religion
touch
Treatment Refusal
-
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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/10.1097/ANC.0000000000001113" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/ANC.0000000000001113</a>
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Title
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Chinese Neonatal Nurses' Lived Experiences of Providing End-of-Life Care in the NICU: A Descriptive Phenomenological Study
Publisher
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Advances in Neonatal Care
Date
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2023
Subject
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terminal care; human; newborn; psychology; emotion; neonatal intensive care unit; infant; neonatal nurse; East Asian
Creator
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Tong-Hui S; Qi L; Xiao-Li R; Guo-Qin Y; Li-Ping W; Lin W
Description
An account of the resource
Background: Although end-of-life care (EOLC) has been well-studied, the experience of neonatal intensive care unit (NICU) nurses in China, where little EOLC training is provided, requires further investigation. Purpose: To explore the lived experience of EOLC delivery among NICU nurses, to provide evidence to enhance nurses' EOLC skills and improve their overall quality. Methods: This qualitative study adopted a phenomenological approach. A total of 11 NICU nurses participated in semistructured in-depth interviews between June and July 2022 at the First Affiliated Hospital of University of Science and Technology of China (USTC). Colaizzi's 7-step method was used to analyze the data. Results: Five main themes were identified: (a) multiple emotions are experienced during EOLC delivery; (b) EOLC delivery is stressful from various sources for nurses; (c) expressing empathy and compassion is important; (d) ethical and clinical decision-making are key components of EOLC delivery; and (e) there are challenges in improving neonatal EOLC understanding and delivery. Implications for practice and research: The experience of EOLC among Chinese NICU nurses is multidimensional and intensive. Institutions or units must establish and implement related protocols and guidelines to address differences between clinical practice and ideal protocols for neonatal EOLC. Educational programs that consider nurses' personal and interpersonal factors, including local culture, must be developed. Neonatal nurses in Western countries encountering Chinese-born parents who have lost their infants can gain an understanding of parents' perceptions from this study. Future research should focus on developing and testing interventions to train and support NICU nurses working with end-of-life neonates.
Identifier
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<a href="http://doi.org/10.1097/ANC.0000000000001113" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000001113</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
Advances in Neonatal Care
East Asian
Emotion
February List 2024
Guo-Qin Y
Human
Infant
Li-Ping W
Lin W
Neonatal Intensive Care Unit
Neonatal Nurse
Newborn
Psychology
Qi L
Terminal Care
Tong-Hui S
Xiao-Li R
-
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Title
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February 2024 List
Text
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Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1097/JPN.0000000000000780" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/JPN.0000000000000780</a>
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Title
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A Qualitative Study of Parents' Experiences of Bonding in End-of-Life Care in a Neonatal Intensive Care Unit
Publisher
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Journal of Perinatal & Neonatal Nursing
Date
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2023
Subject
The topic of the resource
child; diagnosis; terminal care; adult; article; human; newborn; clinical article; interview; content analysis; parent; pilot study; qualitative research; newborn intensive care; neonatal intensive care unit; health care personnel; infant; decision making; powerlessness; parenthood; shame
Creator
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Funkquist EL; Lindquist A; Edner A
Description
An account of the resource
To examine the parent's experiences of bonding in the care of newborns who were seriously ill during the neonatal period and did not survive. Design: Data were collected through 7 interviews with 10 parents whose infants were cared for and died in a neonatal intensive care unit. Methods: The interviews were pilot processed using inductive content analysis and then processed again using deductive content analysis with the attachment theory applied as a theoretical frame. Results: Three main themes emerged from the parents' descriptions: 1. The parents' relationship with the healthcare provider: an alliance between the parent and the healthcare provider can facilitate communication, for example, the use of proposals to promote parents' role in the care; 2. The parents' relationship with the infant: parents' wish to fulfill the role of a protective parent, and it is of importance for the parents' future well-being to take part in care and decision making; and 3. The parents' relationship with the own self: in this unknown situation, parents' expectations of parenthood are broken, and they experience feelings of shame and powerlessness. Conclusion: The relationship between the parent and the healthcare provider affects how the parents bond with their child and their experiences of the healthcare.
Identifier
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<a href="http://doi.org/10.1097/JPN.0000000000000780" target="_blank" rel="noreferrer noopener">10.1097/JPN.0000000000000780</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
Adult
Article
Child
Clinical Article
Content Analysis
Decision Making
Diagnosis
Edner A
February List 2024
Funkquist EL
Health Care Personnel
Human
Infant
Interview
Journal of Perinatal & Neonatal Nursing
Lindquist A
Neonatal Intensive Care Unit
Newborn
Newborn Intensive Care
Parent
parenthood
Pilot Study
Powerlessness
Qualitative Research
shame
Terminal Care
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Title
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October 2023 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 List 2023
URL Address
<a href="http://doi.org/10.1136/spcare-2023-004305" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/spcare-2023-004305</a>
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Title
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Neonatal serious illness: operational definition
Publisher
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BMJ supportive & palliative care
Date
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2023
Subject
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Infant Newborn; terminal care; article; cohort analysis; controlled study; female; human; major clinical study; male; newborn; retrospective study; palliative therapy; pediatrics; infant; conversation; rank sum test; cause of death; hospital care; prognosis
Creator
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Guttmann K; Silverman R; Weintraub AS
Description
An account of the resource
OBJECTIVES: (1) To operationalise our previously published definition of neonatal serious illness by applying it to a patient cohort and (2) to evaluate timing of palliative care consultation, goals of care discussions and meeting serious illness criteria. METHOD(S): This was a retrospective chart review. Inborn neonates delivered between January 2006 and December 2020 who died prior to neonatal intensive care unit discharge were identified through EPIC query. Kruskal-Wallis and Mann-Whitney-U tests were used to compare time intervals relating to transition to serious illness across causes of death and other factors. chi2 tests were used to examine frequency of goals of care conversations by factors. RESULT(S): Eighty-eight per cent of patients met criteria for neonatal serious illness within 48 hours of life. There were no significant differences in transition to serious illness between preterm and term infants. Time to identification of serious illness varied significantly by cause of death. Palliative care was consulted for 5.7% of patients. CONCLUSION(S): All patients met criteria for serious illness early in life based on our definition. This definition may be useful for identifying neonates with serious illness in time to provide support. Additional work is needed to apply this definition prospectively to explore its utility for clinical care and research.Copyright © Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/spcare-2023-004305" target="_blank" rel="noreferrer noopener">10.1136/spcare-2023-004305</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
Article
BMJ Supportive & Palliative Care
Cause Of Death
Cohort Analysis
Controlled Study
Conversation
Female
Guttmann K
Hospital care
Human
Infant
Infant Newborn
Major Clinical Study
Male
Newborn
October List 2041
Palliative Therapy
Pediatrics
Prognosis
rank sum test
Retrospective Study
Silverman R
Terminal Care
Weintraub AS
-
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Title
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August 2023 List
Text
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Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1111/nicc.12943" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/nicc.12943</a>
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Title
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Neonatal organ donation: Retrospective audit into potential donation in a single neonatal unit
Publisher
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Nursing in Critical Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Infant, Newborn; England; article; human; newborn; newborn death; terminal care; documentation; human tissue; newborn intensive care; patient referral; neonatal intensive care unit; surgery; infant; conversation; nurse; cause of death; eligibility; transplantation; brain injury; cooling; organ donor
Creator
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Ali F; Chant K; Scales A; Sellwood M; Gallagher K
Description
An account of the resource
Background: Research has shown that many babies who die in neonatal units could have been potential tissue and/or organ donors. Despite the existence of guidelines supporting its implementation, the incidence of neonatal donation remains rare in the United Kingdom. Aim: The aim of this audit was to retrospectively determine potential eligibility for neonatal tissue and/or organ donation referral in infants who died in a single UK tertiary-level neonatal unit between 2012 and 2021. Cause of death and documentation of any discussions held regarding referral for donation were also explored. Study design: An audit was undertaken to identify all neonatal deaths at a single tertiary-level NICU in London from 2012-2021. Infants who retrospectively could have been referred as potential tissue and/or organ donors were identified using current NHS Blood and Transplant inclusion and exclusion criteria. Results and conclusion: A significant missed potential for neonatal tissue and/or organ donation referrals was identified, which is likely not just limited to the unit audited. Causes of death were as expected for a tertiary level neonatal unit and centre for therapeutic cooling of babies born with hypoxic perinatal brain injuries. Only one documented conversation was found regarding neonatal donation. Relevance to clinical practice: To enable conversations regarding neonatal donation to become a routine part of end-of-life care discussions with families as appropriate, good links between neonatal healthcare professionals and Specialist Nurses in Organ Donation need to be established. This will facilitate the referral of all suitable neonates as potential donors and ensure that neonatal staff feel supported to care for babies identified as potential donors.
Identifier
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<a href="http://doi.org/10.1111/nicc.12943" target="_blank" rel="noreferrer noopener">10.1111/nicc.12943</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
Ali F
Article
August List 2023
Brain Injury
Cause Of Death
Chant K
Conversation
cooling
Documentation
eligibility
England
Gallagher K
Human
Human Tissue
Infant
Infant, Newborn
Neonatal Intensive Care Unit
Newborn
Newborn Death
Newborn Intensive Care
Nurse
Nursing In Critical Care
organ donor
Patient Referral
Scales A
Sellwood M
Surgery
Terminal Care
Transplantation
-
Dublin Core
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Title
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July 2023 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
July List 2023
URL Address
<a href="http://doi.org/10.1016/j.siny.2023.101438" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.siny.2023.101438</a>
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Title
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Ethics at the end of life in the newborn intensive care unit: Conversations and decisions
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
2023
Subject
The topic of the resource
bioethics; conversation; decision making; ethics; neonatal intensive care unit; treatment withdrawal; active euthanasia; artificial ventilation; controlled study; critically ill patient; human; hydration; hypoxic ischemic encephalopathy; infant; Infant Newborn; Intensive Care Units; Intensive Care Units Neonatal; neonatologist; newborn; nutrition; resuscitation; review
Creator
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Mercurio MR; Gillam L
Description
An account of the resource
The unexpected birth of a critically ill baby raises many ethical questions for neonatologists. Some of these are obviously ethical questions, about whether to attempt resuscitation, and, if the baby is resuscitated and survives, whether to continue life sustaining interventions. Other ethical decisions are more related to what to say rather than what to do. Although less obvious, they are equally as important, and may also have far-reaching ramifications. This essay presents the story of a newborn with profound hypoxic-ischemic encephalopathy, and reviews decisions regarding resuscitation, withdrawal of mechanical ventilation, withdrawal of medically administered nutrition and hydration, and active euthanasia. An overview of the ethical issues at work at each decision point is presented, as well as guidance regarding discussions with parents throughout the process, including specific wording. This may serve as a helpful guide for ethical deliberation, and helpful scripting for parental discussion, in similar cases.Copyright © 2023 Elsevier Ltd
Identifier
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<a href="http://doi.org/10.1016/j.siny.2023.101438" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2023.101438</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
active euthanasia
Artificial Ventilation
Bioethics
Controlled Study
Conversation
Critically Ill Patient
Decision Making
Ethics
Gillam L
Human
Hydration
hypoxic ischemic encephalopathy
Infant
Infant Newborn
Intensive Care Units
Intensive Care Units Neonatal
July List 2023
Mercurio MR
Neonatal Intensive Care Unit
Neonatologist
Newborn
Nutrition
Resuscitation
Review
Seminars in Fetal and Neonatal Medicine
Treatment Withdrawal
-
Dublin Core
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Title
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July 2023 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
July List 2023
URL Address
<a href="http://doi.org/10.1016/j.siny.2023.101436" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.siny.2023.101436</a>
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Title
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Paediatric palliative care in the NICU: A new era of integration
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
2023
Subject
The topic of the resource
neonatal intensive care unit; palliative therapy; child; female; human; human experiment; infant; male; newborn; Palliative Care; review; skill; social needs; standard; terminal care
Creator
An entity primarily responsible for making the resource
Bertaud S; Montgomery AM; Craig F
Description
An account of the resource
We are entering a new era of integration between neonatal medicine and paediatric palliative care, with increasing recognition that the role and skills of palliative care extend beyond care of only the terminally ill infant. This paper addresses the principles of paediatric palliative care and how they apply in the NICU, considers who provides palliative care in this setting and outlines the key components of care. We consider how the international standards of palliative care pertain to neonatal medicine and how a fully integrated approach to care may be realised across these two disciplines. Palliative care is so much more than end-of-life care, offering a proactive and holistic approach which addresses the physical, emotional, spiritual and social needs of the infant and family. This is a truly interdisciplinary endeavour, relying on a harmonisation of the skills from both the neonatal and palliative care teams to deliver high-quality coordinated care.Copyright © 2023
Identifier
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<a href="http://doi.org/10.1016/j.siny.2023.101436" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2023.101436</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
Bertaud S
Child
Craig F
Female
Human
Human Experiment
Infant
July List 2023
Male
Montgomery AM
Neonatal Intensive Care Unit
Newborn
Palliative Care
Palliative Therapy
Review
Seminars in Fetal and Neonatal Medicine
Skill
social needs
standard
Terminal Care
-
Dublin Core
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Title
A name given to the resource
May 2023 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
May List 2023
URL Address
<a href="http://doi.org/10.1136/archdischild-2022-325157" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2022-325157</a>
Dublin Core
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Title
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Data-driven approach to understanding neonatal palliative care needs in England and Wales: a population-based study 2015-2020
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
England; neonatology; palliative therapy; Wales; article; England; female; human; infant; Infant Newborn; long term survival; major clinical study; male; morbidity; newborn; newborn care; Palliative Care; perinatal care; Wales
Creator
An entity primarily responsible for making the resource
Harnden F; Lanoue J; Modi N; Uthaya SN; Battersby C
Description
An account of the resource
Abstract Objective To quantify admissions to neonatal units in England and Wales with potential need for palliative care. Design, setting and patients Diagnoses and clinical attributes indicating a high likelihood of requiring palliative care were mapped to categories within the British Association of Perinatal Medicine’s (BAPM) framework on palliative care. We extracted data from the National Neonatal Research Database on all babies born and admitted to neonatal units in England and Wales 2015–2020. Outcomes The number and proportion of babies meeting BAPM categories, their discharge outcomes and the characteristics of babies who died during neonatal care but did not fulfil any BAPM category. Results 12 123/574 954 (2.1%) babies met one or more BAPM category: 6239/12 123 (51%) conformed to BAPM category 4 (postnatal conditions with high risk of severe impairment), 3796 (31%) to category 2 (antenatal/postnatal diagnosis with high risk of significant morbidity or death), 1399 (12%) to category 3 (born at margin of viability) and 288 (2%) to category 1 (antenatal/postnatal diagnosis not compatible with long-term survival); 401 babies (3%) met criteria for multiple categories. 6814/12 123 (56%) were discharged home, 2385 (20%) were discharged to other settings and 2914 (24%) died before neonatal discharge. 3000/5914 (51%) babies who died during neonatal care did not conform to any BAPM category. Of these, 2630/3000 (88%) were born preterm. Conclusions At least 2% of babies admitted to neonatal units had palliative care needs according to existing BAPM categories; most survived to discharge. Of deaths, 51% were not captured by the BAPM categories; most were extremely preterm.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2022-325157" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2022-325157</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
Archives of Disease in Childhood
Article
Battersby C
England
Female
Harnden F
Human
Infant
Infant Newborn
Lanoue J
long term survival
Major Clinical Study
Male
May List 2023
Modi N
Morbidity
Neonatology
Newborn
Newborn Care
Palliative Care
Palliative Therapy
Perinatal Care
Uthaya SN
Wales
-
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April 2023 List
Text
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April List 2023
URL Address
<a href="http://doi.org/10.1055/s-0041-1730916" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1055/s-0041-1730916</a>
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Title
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Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease
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Journal of Pediatric Intensive Care
Date
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2023
Subject
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intensive care unit; Palliative Care; child; article; female; human; major clinical study; male; newborn; retrospective study; advance care planning; palliative therapy; medical decision making; pediatrics; artificial ventilation; terminal care; hospitalization; information technology; hospital patient; patient referral; life sustaining treatment; congenital heart disease; consultation; mortality; pulmonary hypertension; infant; hospitalized child; length of stay; pediatric patient; extracorporeal oxygenation; disease course; cardiomyopathy; heart disease; catheterization; myocarditis; myopericarditis; pericarditis
Creator
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Green DJ; Bennett E; Olson LM; Wawrzynski S; Bodily S; Moore D; Mansfield KJ; Wilkins V; Cook L; Delgado-Corcoran C
Description
An account of the resource
Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC referral at the time of heart disease diagnosis provides early involvement in the disease trajectory, allowing PPC teams to longitudinally support patients and families with symptom management, complex medical decision-making, and advanced care planning. We analyzed 113 hospitalized pediatric patients with a primary diagnosis of heart disease and a PPC consult to identify timing of first PPC consultation in relation to diagnosis, complex chronic conditions (CCC), and death. The median age of heart disease diagnosis was 0 days with a median of two CCCs while PPC consultation did not occur until a median age of 77 days with a median of four CCCs. Median time between PPC consult and death was 33 days (interquartile range: 7-128). Death often occurred in the intensive care unit (n = 36, 67%), and the most common mode was withdrawal of life-sustaining therapies (n = 31, 57%). PPC referral often occurred in the context of medical complexity and prolonged hospitalization. Referral close to the time of heart disease diagnosis would allow patients and families to fully utilize PPC benefits that exist outside of end-of-life care and may influence the mode and location of death. PPC consultation should be considered at the time of heart disease diagnosis, especially in neonates and infants with CCCs.Copyright © 2023 Georg Thieme Verlag. All rights reserved.
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<a href="http://doi.org/10.1055/s-0041-1730916" target="_blank" rel="noreferrer noopener">10.1055/s-0041-1730916</a>
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2023
Advance Care Planning
April List 2023
Article
Artificial Ventilation
Bennett E
Bodily S
Cardiomyopathy
Catheterization
Child
Congenital Heart Disease
Consultation
Cook L
Delgado-Corcoran C
Disease Course
extracorporeal oxygenation
Female
Green DJ
heart disease
Hospital Patient
Hospitalization
Hospitalized Child
Human
Infant
information technology
Intensive Care Unit
Journal of Pediatric Intensive Care
Length Of Stay
Life Sustaining Treatment
Major Clinical Study
Male
Mansfield KJ
Medical Decision Making
Moore D
Mortality
Myocarditis
myopericarditis
Newborn
Olson LM
Palliative Care
Palliative Therapy
Patient Referral
pediatric patient
Pediatrics
pericarditis
pulmonary hypertension
Retrospective Study
Terminal Care
Wawrzynski S
Wilkins V
-
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Title
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March 2023 List
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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).
Text
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March List 2023
URL Address
<a href="http://doi.org/10.1371/journal.pone.0280081" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1371/journal.pone.0280081</a>
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Neonatal Palliative Care: Assessing the Nurses Educational Needs for Terminally Ill Patients
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PLoS One
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Nursing Staff; Palliative Care; Child; Cross-Sectional Studies; Education; Nursing; Female; Human; Infant; Newborn; Male; Palliative Care; Surveys and Questionnaires; Terminally Ill
Creator
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Khraisat OM; Al-Bashaireh AM; Khafajeh R; Alqudah O
Description
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BACKGROUND: For terminally sick neonates and their families, it's crucial to provide holistic nursing care that incorporates both curative and palliative care as much as feasible. It is well known that the biggest obstacle to delivering palliative care for neonatal children is a lack of training for nurses. Aim: The aim of this research is to investigate the experiences of nurses who provide care for neonates who are terminally ill as well as their educational requirements for neonatal palliative care. METHOD: A cross-sectional descriptive study was conducted among 200 nurses working in a tertiary center providing care for terminally ill neonates in Saudi Arabia. Data was collected from using Neonatal Palliative Care Questionnaire (QNPC) from January 2021 to March 2021. RESULTS: Two hundred nurses were surveyed (the response rate was 79%). The mean age of the 158 participants was 35.67 (standard deviation (SD): 7.43), and the majority were female (151; 95.6%). The majority were bachelor's holders (119; 75.3%), with more than 5 years of experience in providing care for neonates (100; 63.3%). Most of the participants reported not receiving any education about palliative care (115; 72.8%). Nurses reported a moderate level of experience in all areas of neonatal palliative care. The total mean score of palliative care experiences of neonates was 3.42 (SD: 1.35). However, the majority of nurses reported little experience discussing the transition period to palliative care for neonates 2.95 (SD: 1.93), the discussion of code status (DNR) during terminal illness of neonates 3.11 (SD: 1.54) and spiritual support 2.90 (SD: 1.55). CONCLUSION: The assessment of the fundamental skills of neonatal palliative care by nurses was insufficient. To enhance the quality of care, it is crucial to incorporate education on neonatal palliative care into programs for nursing staff development.
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<a href="http://doi.org/10.1371/journal.pone.0280081" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0280081</a>
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2023
Al-Bashaireh AM
Alqudah O
Child
Cross-sectional Studies
Education
Female
Human
Infant
Khafajeh R
Khraisat OM
Male
March List 2023
Newborn
Nursing
Nursing Staff
Palliative Care
PLoS One
Surveys And Questionnaires
Terminally Ill
-
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Title
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February 2023 List
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February List 2023
URL Address
<a href="http://doi.org/10.1177/10499091221088829" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/10499091221088829</a>
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Ethics Roundtable: How Much is Too Much?
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American Journal of Hospice and Palliative Medicine
Date
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2023
Subject
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Infant; Newborn; Humans; Infant; Premature Ectodermal Dysplasia Pylorus/abnormalities; Gastric Outlet Obstruction; Carmi syndrome; end-of-life; epidermolysis bullosa; ethics; Life-limiting condition; Palliative Care
Creator
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Theodoro MF; Hays J; DiBartolomeo M; Carter B
Description
An account of the resource
How should the medical team approach care for a very preterm infant with a significant painful and life-limiting condition when the parents wish to pursue all life-sustaining therapies? Here, we discuss a case of an infant born at 28 weeks' gestation with a diagnosis of Carmi syndrome (junctional epidermolysis bullosa and pyloric atresia). While the medical team felt that a do-not-resuscitate order and redirection to comfort care were appropriate, the family held on to hope for recovery and wished to continue with full intensive care measures.
Identifier
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<a href="http://doi.org/10.1177/10499091221088829" target="_blank" rel="noreferrer noopener">10.1177/10499091221088829</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
American Journal of Hospice and Palliative Medicine
Carmi syndrome
Carter B
DiBartolomeo M
end-of-life
epidermolysis bullosa
Ethics
February List 2023
Gastric Outlet Obstruction
Hays J
Humans
Infant
Life-limiting Condition
Newborn
Palliative Care
Premature Ectodermal Dysplasia Pylorus/abnormalities
Theodoro MF
-
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Title
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October 2022 List
Text
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Citation List Month
October 2022 List
URL Address
<a href="http://doi.org/10.1177/10499091221113277">http://doi.org/10.1177/10499091221113277</a>
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Title
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Factors that Contribute to Bereaved Parents' Perceptions of Neonatal Palliative Care: A Systematic Literature Review
Publisher
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American Journal of Hospice and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
infant; review; guideline; neonatal; newborn; parent; experience; family; quality; satisfaction; palliative; Reviews; human; article; female; male; perception; psychological; therapy; practice; care; Reporting; intensive; unit; and; for; Items; Meta-Analyses; Preferred; systematic; Systematic; analysis; meta; units
Creator
An entity primarily responsible for making the resource
Hamel M N; Beltran SJ
Description
An account of the resource
OBJECTIVES: Neonatal palliative care (NPC) is an emerging subset of care in United States (US) neonatal intensive care units (NICUs) that provides relief for both infants and families at the end of life for infants with terminal diagnoses. Families play a integral role in the decision-making process for their infant, but their experiences with and perceptions of the support and care provided to them via NPC is unclear to health professionals. This literature review summarizes the state of knowledge on parents' perspectives of NPC while focusing on the specific factors that influence their experiences and satisfaction with NPC. METHOD(S): A systematic literature review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Articles published in peer-reviewed journals between January 2010 and January 2021 that investigated parents' perceptions of neonatal palliative care either as their central topic or as a sub-topic as part of a larger focus. RESULT(S): A total of 16 articles (N = 16) were included in this review. Three overarching themes encompass the findings of the literature review: parent-clinician interactions, parent-infant interactions, and parent-self interactions. Within these themes, topics such as consistent and clear communication, involvement in care decisions, and social and psychological support were explored. CONCLUSION(S): Clinicians must focus on these important quality indicators to ensure they provide the best care possible to the patients and families that they serve. Further research must be done to investigate parent satisfaction and needs in relation to NPC more deeply and to develop more supportive interventions and protocols.
Identifier
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<a href="http://doi.org/10.1177/10499091221113277">10.1177/10499091221113277</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).
2022
Analysis
and
Article
Beltran SJ
CARE
Experience
Family
Female
for
guideline
Hamel M N
Human
Infant
intensive
Items
Male
meta
Meta-analyses
Neonatal
Newborn
October 2022 List
Palliative
Parent
Perception
Practice
Preferred
Psychological
Quality
Reporting
Review
Reviews
Satisfaction
systematic
The American Journal of Hospice & Palliative Care
Therapy
Unit
Units
-
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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/10.1089/jpm.2018.0303" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0303</a>
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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
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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>
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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
-
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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/nnr.0000000000000369" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/nnr.0000000000000369</a>
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Title
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Experience of Perinatal Death From the Father's Perspective
Publisher
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Nursing Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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Adolescent; Colombia; Emotions; Fathers; Grief; Infant; Male; Middle Aged; Newborn; Perinatal Death; Qualitative Research; Young Adult
Creator
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Lizcano PLDM; Moreno Fergusson ME; Palacios AM
Description
An account of the resource
BACKGROUND: Although perinatal deaths are still a common pregnancy outcome in developing countries, little is known about the effect perinatal death has on fathers. OBJECTIVE: The aim of the study was to understand and describe the meaning of perinatal death in a sample of fathers from northeastern Colombia. METHODS: Using purposive and snowball sampling approaches, we identified 15 participants from northeastern Colombia who agreed to participate. We used a descriptive phenomenological design. Data were collected through in-depth, semistructured interviews. RESULTS: Men suffer in solitude and hide their emotions as they feel the need to be the main supporters of their partners. Three major themes emerged: experience of loss, coming to terms with an irreparable loss, and overcoming the loss. DISCUSSION: While women are receiving care, health staff may neglect or forget men. Men suffer alone while seeking ways of attunement with their partners' emotions to support them during the grieving process. Fathers can overcome and adjust to the loss when they transcend it and find new meaning. Men felt neglected and marginalized at hospitals while their partners were receiving treatment. Health professionals should recognize and acknowledge the pain of fathers who face perinatal death and include them as much as possible in the standard of care. The results identify opportunities for healthcare providers in clinical and outpatient settings to acknowledge the importance of men within the context of pregnancy and to learn about their pain and suffering when they face a perinatal death.
Identifier
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<a href="http://doi.org/10.1097/nnr.0000000000000369" target="_blank" rel="noreferrer noopener">10.1097/nnr.0000000000000369</a>
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2019
2022 Special Edition 1 - Parent Perspectives
Adolescent
Colombia
Emotions
Fathers
Grief
Infant
Lizcano PLDM
Male
Middle Aged
Moreno Fergusson ME
Newborn
Nursing Research
Palacios AM
Perinatal Death
Qualitative Research
Young Adult
-
Dublin Core
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Title
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March 2022 List
Text
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March 2022 List
URL Address
<a href="http://doi.org/10.1016/j.anpede.2021.10.003" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.anpede.2021.10.003</a>
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Title
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Perinatal palliative care
Publisher
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Anales de Pediatría (English Edition)
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Bereavement; Child; Infant; Life-limiting condition; Life-threatening condition; Neonatal death; Newborn; Palliative Care; Perinatal Care; Perinatal palliative care; Pregnancy; Quality of Life
Creator
An entity primarily responsible for making the resource
Martín-Ancel A; Pérez-Muñuzuri A; González-Pacheco N; Boix H; Espinosa Fernández MG; Sánchez-Redondo MD; Cernada M; Couce ML
Description
An account of the resource
Perinatal Palliative Care is a model of care designed to prevent and treat the physical, spiritual, emotional, and social needs of fetuses and newborn infants with life-threatening or life-limiting conditions. The care extends to the infant's family. It is delivered by an interdisciplinary team to improve the quality of life from the time of diagnosis (possibly in utero) into death and bereavement (days, months or years later). To guarantee the access of this vulnerable population to high quality palliative care, structured programs and protocols need to be further developed in tertiary hospitals that treat highly complex obstetric and neonatal pathologies. Basic training is required for all the professionals involved.
Identifier
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<a href="http://doi.org/10.1016/j.anpede.2021.10.003" target="_blank" rel="noreferrer noopener">10.1016/j.anpede.2021.10.003</a>
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2022
Anales de Pediatría (English Edition)
Bereavement
Boix H
Cernada M
Child
Couce ML
Espinosa Fernández MG
González-Pacheco N
Infant
Life-limiting Condition
Life-threatening Condition
March 2022 List
Martín-Ancel A
Neonatal Death
Newborn
Palliative Care
Pérez-Muñuzuri A
Perinatal Care
Perinatal Palliative Care
Pregnancy
Quality Of Life
Sánchez-Redondo MD
-
Dublin Core
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Title
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July 2021 List
Text
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Citation List Month
July 2021 List
URL Address
<a href="http://doi.org/10.1186/s12910-021-00624-4" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12910-021-00624-4</a>
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Title
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Something must happen before first breath
Publisher
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BMC Medical Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Infant; Newborn; Brain’s activation; Brain’s development; Extrauterine environment; First breath; Foetus; Human birth
Creator
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Polese D; Fagioli M; Virgili F; Fiori Nastro P
Description
An account of the resource
BACKGROUND: Definition and concept of the 'beginning of human life' are weakened by co-existing contrasting hypotheses based on humanistic or religious beliefs rather than scientific foundations. This plethora of conceptually distant views have important common concerns in different fields of science and shape, in turn, several societal aspects including laws related, for instance, to inheritance eligibility or abortion, end-of-life care and euthanasia, and reproductive technology. Also, they are fundamental to evaluate opportunity for resuscitation vs. palliative care in extremely preterm infants. In this article, we address one of the most common tenets in medicine: the acceptance that human life starts with first breath, even though several events are well-documented to take place before its occurrence. MAIN TEXT: Several studies show how pivotal physiological events take place before first breath. Evidence of a number of neurological events occurring before first breath opens the way to the primacy of the Central Nervous System, given its immediate extra-uterine activation at birth. This activation eventually sets specific physiological conditions that allow the complex sequence of events determining the muscle activity associated with the influx of air in the lung and the settling of a continuous and successful extra-uterine respiration. We would like to invite the scientific community to endorse a clear-cut position against the paradigm of 'first breath' as the beginning of life. Herein, we also assume how, a still undefined, yet possibly specific quid in the external environment triggers further physiological response in newborns. Better understanding of the critical events that occur at the beginning of human life is likely to cause great concern and expectations in scientists, researchers and physicians working in the domain of brain, and its physiology, and mental health. CONCLUSIONS: The comparison between beliefs and evidence-based observations generates confusion, misperceptions and false expectations in society, hence, in the scientific and medical community. Different and more solid alternatives about the carachterization of the 'beginning of human life' are indeed available and require to be explored and defined.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12910-021-00624-4" target="_blank" rel="noreferrer noopener">10.1186/s12910-021-00624-4</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).
2021
Bmc Medical Ethics
Brain’s activation
Brain’s development
Extrauterine environment
Fagioli M
Fiori Nastro P
First breath
Foetus
Human birth
Infant
July 2021 List
Newborn
Polese D
Virgili F
-
Dublin Core
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Title
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May 2021 List
Text
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Citation List Month
May 2021 List
URL Address
<a href="http://doi.org/10.1016/j.pedn.2021.03.013" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pedn.2021.03.013</a>
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Title
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Being a Parent: Findings from a Grounded Theory of Memory-Making in Neonatal End-Of-Life Care
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
2021
Subject
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Infant; Bereavement; Photography; Parent; Newborn; Memory-making
Creator
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Thornton R; Nicholson P; Harms L
Description
An account of the resource
PURPOSE: Neonatal palliative care guidelines increasingly recommend that parents be encouraged to provide care for their dying baby and to spend time with the before and after death. However, little is currently known about how parents perceive such memory-making interventions. This study explored the significance of memory-making for bereaved parents and the impact of memory-making on parents' experience of neonatal end-of-life care. DESIGN AND METHODS: We conducted extended interviews with 18 parents who had experienced neonatal loss. Corbin and Strauss' grounded theory method was used throughout sampling, data collection and data analysis. A constant comparative approach was utilised throughout each stage of the data collection/data analysis process, resulting in the development of a grounded theory titled "Affirmed Parenthood". RESULTS: The core category of "Affirmed parenthood" was underpinned by three primary categories: 'Creating Evidence', 'Needing Guidance' and 'Being a parent'. Opportunities to parent the baby by having contact with them, engaging with them, and providing care were central to parent's experiences of memory-making in the context of neonatal bereavement. CONCLUSIONS: 'Being a Parent' provided important affirmation of the baby's identity and importance, and affirmed the role of the parents. 'Being a Parent' was a critical element of memory-making and had a significant impact on parents' experience of loss. PRACTICE IMPLICATIONS: Parents should be supported to have unrestricted contact with their baby, to engage with them, and to provide care throughout the baby's brief life and after their baby's death.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pedn.2021.03.013" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2021.03.013</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).
2021
Bereavement
Harms L
Infant
Journal of Pediatric Nursing
May 2021 List
Memory-making
Newborn
Nicholson P
Parent
Photography
Thornton R
-
Dublin Core
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Title
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2020 Oncology List
Text
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Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1002/pbc.27993" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.27993</a>
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Title
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Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
newborn; social support; child; human; adult; female; major clinical study; male; retrospective study; article; priority journal; aged; Bereavement; adolescent; terminal care; quality of life; emotion; Parent; psychologist; social worker; content analysis; interpersonal communication; quantitative analysis; time of death; infant; caregiver; pediatric patient; nurse; support group; thematic analysis; psycho-oncology; open ended questionnaire; childhood cancer/dm [Disease Management]; pediatric oncologist; health care need; social media; worker
Creator
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Wiener L; Tager J; Mack J; Battles H; Bedoya S Z; Gerhardt C A
Description
An account of the resource
Background: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents.
Identifier
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<a href="http://doi.org/10.1002/pbc.27993" target="_blank" rel="noreferrer noopener">10.1002/pbc.27993</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).
2020
Adolescent
Adult
Aged
Article
Battles H
Bedoya S Z
Bereavement
Caregiver
Child
childhood cancer/dm [Disease Management]
Content Analysis
Emotion
Female
Gerhardt C A
health care need
Human
Infant
Interpersonal Communication
Mack J
Major Clinical Study
Male
Newborn
Nurse
Oncology 2020 List
open ended questionnaire
Parent
Pediatric Blood and Cancer
pediatric oncologist
pediatric patient
Priority Journal
Psycho-Oncology
Psychologist
Quality Of Life
quantitative analysis
Retrospective Study
social media
Social Support
Social Worker
support group
Tager J
Terminal Care
Thematic Analysis
time of death
Wiener L
worker
-
Dublin Core
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Title
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2020 Developing World 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
Developing World 2020 List
URL Address
<a href="http://doi.org/10.1371/journal.pone.0236194" target="_blank" rel="noreferrer noopener">http://doi.org/10.1371/journal.pone.0236194</a>
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Title
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Basic neonatal resuscitation skills of midwives and nurses in Eastern Ethiopia are not well retained: An observational study
Publisher
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PLoS One
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Infant; Humans; Adolescent; Female; Male; Middle Aged; Cross-Sectional Studies; Clinical Competence; Adult; Young Adult; Pregnancy; Education; Checklist; Newborn; Ethiopia; Asphyxia Neonatorum/*therapy; Midwifery/*education; Neonatal Nursing/*education; Resuscitation/*methods; Nursing/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Sintayehu Y; Desalew A; Geda B; Tiruye G; Mezmur H; Shiferaw K; Mulatu T
Description
An account of the resource
BACKGROUND: Neonatal resuscitation is a life-saving intervention for birth asphyxia, a leading cause of neonatal mortality. Worldwide, four million neonate deaths happen annually, and birth asphyxia accounts for one million deaths. Improving providers' neonatal resuscitation skills is critical for delivering quality care and for morbidity and mortality reduction. However, retention of these skills has been challenging in developing countries, including Ethiopia. Hence, this study aimed to assess neonatal resuscitation skills retention and associated factors among midwives and nurses in Eastern Ethiopia. METHODS: An institution-based cross-sectional study was conducted using a pre-tested, structured, observational checklist. A total of 427 midwives and nurses were included from 28 public health facilities by cluster sampling and simple random sampling methods. Data were collected on facility type, availability of essential resuscitation equipment, socio-demographic characteristics of participants, current working unit, years of professional experience, whether a nurse or midwife received refresher training, and skills and knowledge related to neonatal resuscitation. Binary logistic regression was used to analyse the association between neonatal resuscitation skill retention and independent variables. RESULTS: About 11.2% of nurses and midwives were found to have retention of neonatal resuscitation skills. Being a midwife (AOR, 7.39 [95% CI: 2.25, 24.24]), ever performing neonatal resuscitation (AOR, 3.33 [95% CI: 1.09, 10.15]), bachelor sciences degree or above (AOR, 4.21 [95% CI: 1.60, 11.00]), and good knowledge of neonatal resuscitation (AOR, 3.31 [95% CI: 1.41, 7.73]) were significantly associated with skill retention of midwives and nurses. CONCLUSION: Basic neonatal resuscitation skills of midwives and nurses in Eastern Ethiopia are not well retained. This could increase the death of neonates due to asphyxia. Being a midwife, Bachelor Sciences degree or above educational status, ever performing neonatal resuscitation, and good knowledge were associated with skill retention. Providers should be encouraged to upgrade their educational level to build their skill retention and expose themselves to NR. Further, understanding factors affecting how midwives and nurses gain and retain skills using high-level methodology are essential.
Identifier
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<a href="http://doi.org/10.1371/journal.pone.0236194" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0236194</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).
2020
Adolescent
Adult
Asphyxia Neonatorum/*therapy
Checklist
Clinical Competence
Cross-sectional Studies
Desalew A
Developing World 2020 List
Education
Ethiopia
Female
Geda B
Humans
Infant
Male
Mezmur H
Middle Aged
Midwifery/*education
Mulatu T
Neonatal Nursing/*education
Newborn
Nursing/statistics & numerical data
PLoS One
Pregnancy
Resuscitation/*methods
Shiferaw K
Sintayehu Y
Tiruye G
Young Adult
-
Dublin Core
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Title
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November 2020 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
November 2020 List
URL Address
<a href="http://doi.org/10.1111/jnu.12600" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jnu.12600</a>
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Title
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Italian Nurses' Attitudes Towards Neonatal Palliative Care: A Cross-Sectional Survey
Publisher
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Journal of nursing scholarship
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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attitude; infant; neonatal nursing; newborn; nurses; palliative care
Creator
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Cerratti F; Tomietto M; Della Pelle C; Kain V; Di Giovanni P; Rasero L; Cicolini G
Description
An account of the resource
PURPOSE: Neonatal palliative care becomes an option for critically ill neonates when death is inevitable. Assessing nurses' attitudes towards, barriers to, and facilitators of neonatal palliative care is essential to delivering effective nursing care. METHOD(S): This study was conducted from January to September 2015 and involved Italian nurses employed in Level III neonatal intensive care units in 14 hospitals in northern, central, and southern Italy. A modified version of the Neonatal Palliative Care Attitudes Scale (NiPCAS) was adopted to assess nurses' attitudes. FINDINGS: A total of 347 neonatal nurses filled out the questionnaire. The majority were female (87.6%), with a mean age of 40.38 (+/-8.3) years. The mean score in the "organization" factor was 2.71 (+/-0.96). The "resources" factor had a mean score of 2.44 (+/-1.00), while the "clinician" factor had a mean score of 3.36 (+/-0.90), indicating the main barriers to and facilitators of implementing palliative nursing care. CONCLUSION(S): Italian neonatal nurses may face different obstacles to delivering neonatal palliative care and to improve their attitudes in this field. In the Italian context, no facilitators of, only barriers to, palliative care delivery were identified. CLINICAL RELEVANCE: Nurses' attitudes towards neonatal palliative care are essential to supporting nurses, who are constantly exposed to the emotional and moral distress connected with this field of end-of-life nursing care. Copyright © 2020 Sigma Theta Tau International.
Identifier
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<a href="http://doi.org/10.1111/jnu.12600" target="_blank" rel="noreferrer noopener">10.1111/jnu.12600</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).
2020
Attitude
Cerratti F
Cicolini G
Della Pelle C
Di Giovanni P
Infant
Journal Of Nursing Scholarship
Kain V
Neonatal Nursing
Newborn
November 2020 List
Nurses
Palliative Care
Rasero L
Tomietto M
-
Dublin Core
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Title
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August 2020 List
Text
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Citation List Month
August 2020 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>
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Title
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Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care
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
2019
Subject
The topic of the resource
Infant; Humans; Female; palliative care; hospice; Retrospective Studies; Adult; Palliative Care/*organization & administration; perinatal; Prenatal Diagnosis; Mothers/*psychology; Newborn; Patient Care Planning/*organization & administration; prenatal; Fetal Diseases/diagnosis/*mortality; Perinatal Care/*organization & administration
Creator
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Kamrath H J; 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>
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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).
2019
Adult
August 2020 List
Female
Fetal Diseases/diagnosis/*mortality
George T
Hospice
Humans
Infant
Journal of Palliative Medicine
Kamrath H J
Mothers/*psychology
Needle J
Newborn
O'Connor-Von S
Osterholm E
Palliative Care
Palliative Care/*organization & Administration
Patient Care Planning/*organization & administration
Perinatal
Perinatal Care/*organization & administration
prenatal
Prenatal Diagnosis
Retrospective Studies
Stover-Haney R
-
Dublin Core
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Title
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July 2020 List
Text
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Citation List Month
July 2020 List
URL Address
<a href="http://doi.org/10.1097/pcc.0000000000001868" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/pcc.0000000000001868</a>
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Title
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Characteristics and Outcomes of Critical Illness in Children With Feeding and Respiratory Technology Dependence
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Adolescent; Artificial/adverse effects/*statistics & numerical data; Biomedical Technology; Case-Control Studies; Child; Critical Care/*methods; Critical Illness/therapy; Health Care/*statistics & numerical data; Humans; Infant; Intensive Care Units; Newborn; Outcome Assessment; Parenteral Nutrition; Pediatric/statistics & numerical data; Preschool; Prospective Studies; Respiration; Severity of Illness Index; Total/adverse effects/*statistics & numerical data
Creator
An entity primarily responsible for making the resource
Heneghan J A; Reeder R W; Dean J M; Meert K L; Berg R A; Carcillo J; Newth C J L; Dalton H; Tamburro R; Pollack M M
Description
An account of the resource
OBJECTIVES: Children with dependence on respiratory or feeding technologies are frequently admitted to the PICU, but little is known about their characteristics or outcomes. We hypothesized that they are at increased risk of critical illness-related morbidity and mortality compared with children without technology dependence. DESIGN: Secondary analysis of prospective, probability-sampled cohort study of children from birth to 18 years old. Demographic and clinical characteristics were assessed. Outcomes included death, survival with new morbidity, intact survival, and survival with functional status improvement. SETTING: General and cardiovascular PICUs at seven participating children's hospitals as part of the Trichotomous Outcome Prediction in Critical Care study. SUBJECTS: Children from birth to 18 years of age as part of the Trichotomous Outcome Prediction in Critical Care study. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Children with technology dependence composed 19.7% (1,989/10,078) of PICU admissions. Compared with those without these forms of technology dependence, these children were younger, received more ICU-specific therapeutics, and were more frequently readmitted to the ICU. Death occurred in 3.7% of technology-dependent patients (n = 74), and new morbidities developed in 4.5% (n = 89). Technology-dependent children who developed new morbidities had higher Pediatric Risk of Mortality scores and received more ICU therapies than those who did not. A total of 3.0% of technology-dependent survivors (n = 57) showed improved functional status at hospital discharge. CONCLUSIONS: Children with feeding and respiratory technology dependence composed approximately 20% of PICU admissions. Their new morbidity rates are similar to those without technology dependence, which contradicts our hypothesis that children with technology dependence would demonstrate worse outcomes. These comparable outcomes, however, were achieved with additional resources, including the use of more ICU therapies and longer lengths of stay. Improvement in functional status was seen in some technology-dependent survivors of critical illness.
Identifier
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<a href="http://doi.org/10.1097/pcc.0000000000001868" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000001868</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).
2019
Adolescent
Artificial/adverse effects/*statistics & numerical data
Berg R A
Biomedical Technology
Carcillo J
Case-Control Studies
Child
Critical Care/*methods
Critical Illness/therapy
Dalton H
Dean J M
Health Care/*statistics & numerical data
Heneghan J A
Humans
Infant
Intensive Care Units
July 2020 List
Meert K L
Newborn
Newth C J L
outcome assessment
Parenteral Nutrition
Pediatric Critical Care Medicine
Pediatric/statistics & Numerical Data
Pollack M M
Preschool
Prospective Studies
Reeder R W
Respiration
Severity Of Illness Index
Tamburro R
Total/adverse effects/*statistics & numerical data
-
Dublin Core
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Title
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June 2020 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
June 2020 List
URL Address
<a href="http://doi.org/10.1016/j.pedn.2020.04.006" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pedn.2020.04.006</a>
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Title
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Creating evidence: Findings from a grounded theory of memory-making in neonatal bereavement care in Australia
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
2020
Subject
The topic of the resource
Bereavement; Infant; Memory-making; newborn; Parent; Photography
Creator
An entity primarily responsible for making the resource
Thornton R; Nicholson P; Harms L
Description
An account of the resource
PURPOSE: Perinatal and neonatal palliative care guidelines recommend the provision of photographs and other mementos as an element of care for parents bereaved by neonatal loss. However, little is known about parents' perceptions of such bereavement interventions. This study explored the significance of memory-making for bereaved parents and the impact of memory-making on parents' experience of loss following neonatal loss. DESIGN AND METHODS: We conducted semi-structured interviews with 18 bereaved parents. A grounded theory approach informed by Corbin and Strauss was used to underpin data sampling, data collection and data analysis. A constant comparative approach was used to engage in open, axial and selective coding to distil parents' stories into categories supporting a core concept. RESULTS: "Creating evidence" emerged as a key theme in the grounded theory of memory-making in bereavement care for parents following neonatal loss. Creating evidence involved taking photographs, creating mementos, as well as involving friends and family during the baby's time in the Neonatal Unit. CONCLUSIONS: Creating evidence affirmed the life of the baby and the role of the parents. Creating evidence was a significant element of memory-making that had a positive impact on parents' experience of bereavement. PRACTICE IMPLICATIONS: Parents should be supported to create evidence of their baby's life, through taking photos, creating mementos, and involving others in their baby's care. Such interventions provide affirmation of the baby's life and of the individual's role as a parent.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pedn.2020.04.006" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2020.04.006</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).
2020
Bereavement
Harms L
Infant
Journal of Pediatric Nursing
June 2020 List
Memory-making
Newborn
Nicholson P
Parent
Photography
Thornton R
-
Dublin Core
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Title
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June 2020 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
June 2020 List
URL Address
<a href="http://doi.org/10.1097/NJH.0000000000000628" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/NJH.0000000000000628</a>
Dublin Core
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Title
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Nurses' Perceptions of the Palliative Care Needs of Neonates With Multiple Congenital Anomalies
Publisher
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Journal of Hospice and Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Abnormalities; Age Factors; Consent (Research); Content Analysis; Data Analysis Software; Descriptive Statistics; Educational Status; Feedback; Female; Health Services Needs and Demand – In Infancy and Childhood; Human; Infant; Intensive Care Units; Interviews; Male; Multiple; Neonatal; Neonatal Intensive Care Nursing; Newborn; Nurse Attitudes – Evaluation; Palliative Care; Quality of Life; Questionnaires; Semi-Structured Interview; Thematic Analysis; Time Factors
Creator
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Şener Taplak A; Gürol A; Polat S
Description
An account of the resource
This study was conducted to determine neonatal intensive care unit (NICU) nurses' opinions about the palliative care needs of neonates with multiple congenital anomalies. The study sample consisted of the 20 nurses who agreed to participate in the study and worked in the NICU between November and December 2017. A one-to-one interview method was utilized using a semistructured interview form. Written consent was obtained from participants and reconfirmed verbally prior to data collection. In the study, most of the nurses stated that the therapeutic medical treatment should not be started for dying neonates with multiple congenital anomalies. It was also found that nurses did not have enough palliative care knowledge for neonates. The palliative care needs of the neonates with multiple congenital anomalies in NICUs were found to be pain management, infection care, enhancing quality of life by avoiding unnecessary medical practices, skin care, the care of the baby in the ventilator, timely application of the treatment of neonates, and supporting family.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/NJH.0000000000000628" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000628</a>
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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
Abnormalities
Age Factors
Consent (Research)
Content Analysis
Data Analysis Software
Descriptive Statistics
Educational Status
Feedback
Female
Gürol A
Health Services Needs and Demand – In Infancy and Childhood
Human
Infant
Intensive Care Units
Interviews
Journal of Hospice and Palliative Nursing
June 2020 List
Male
Multiple
Neonatal
Neonatal Intensive Care Nursing
Newborn
Nurse Attitudes – Evaluation
Palliative Care
Polat S
Quality Of Life
Questionnaires
Semi-Structured Interview
Şener Taplak A
Thematic Analysis
Time Factors
-
Dublin Core
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Title
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April 2020 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
April 2020 List
URL Address
<a href="http://doi.org/10.1177/1359105317705981" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1359105317705981</a>
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Title
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Healthcare professionals' experiences of perinatal loss: A systematic review
Publisher
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Journal of Health Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Abortion; Adult; Female; Health Personnel/*psychology; healthcare professionals; Humans; Infant; Maternal Health Services/*manpower; neonatal units; Newborn; Perinatal Death; Perinatal loss; Pregnancy; psychological experiences; Spontaneous/*psychology; Stillbirth; Stillbirth/*psychology
Creator
An entity primarily responsible for making the resource
Gandino G; Bernaudo A; Di Fini G; Vanni I; Veglia F
Description
An account of the resource
Healthcare professionals' psychological involvement in perinatal loss is a largely overlooked subject by healthcare systems, scientific research and prevention policies. A systematic scientific review has been carried out about emotional experiences, attributed meanings and needs conveyed by healthcare professionals in relation to perinatal loss. We identified 213 studies between 1985 and 2015, 20 of which were included in the present study for qualitative analysis. Our results point out the need for a targeted vocational training in perinatal loss, enabling healthcare professionals to achieve a proper management of their own internal states.
Identifier
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<a href="http://doi.org/10.1177/1359105317705981" target="_blank" rel="noreferrer noopener">10.1177/1359105317705981</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).
2019
Abortion
Adult
April 2020 List
Bernaudo A
Di Fini G
Female
Gandino G
Health Personnel/*psychology
Healthcare Professionals
Humans
Infant
Journal Of Health Psychology
Maternal Health Services/*manpower
neonatal units
Newborn
Perinatal Death
Perinatal Loss
Pregnancy
psychological experiences
Spontaneous/*psychology
Stillbirth
Stillbirth/*psychology
Vanni I
Veglia F
-
Dublin Core
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Title
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2019 Oncology List
Text
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Citation List Month
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1111/ecc.12879" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/ecc.12879</a>
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Burden of treatment in the face of childhood cancer: A quantitative study using medical records of deceased children
Publisher
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European Journal of Cancer Care (Engl)
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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Adaptation; Adolescent; burden of treatment; Central Nervous System Neoplasms/therapy; Child; Death; family; Female; Hospitalization; Humans; Infant; inpatient stays; Length of Stay; leukaemia; Leukemia/therapy; Male; Medical Records; Neoplasms/*therapy; Newborn; paediatric oncology; place of death; Preschool; Psychological; Retrospective Studies; Switzerland; Terminal Care
Creator
An entity primarily responsible for making the resource
Rost M; Wangmo T; Rakic M; Acheson E; Rischewski J; Hengartner H; Kuhne T; Elger B S
Description
An account of the resource
Lived experiences of childhood cancer patients and their families have been described as interrupted and as a loss of normal life. Apart from symptoms due to the cancer disease, families continuously experience burden of treatment. Since coping capacities are unique to each individual, we captured variables that offer objective measures of treatment burden, with a particular focus on the disruptive effects of treatment on families' lives. Our sample was comprised by 193 children that died of cancer. Medical records were extracted retrospectively. Quantitative data were statistically analysed with respect to variables related to treatment burden. Deceased children with cancer and their families faced a significant burden of treatment. Results revealed that deceased leukaemia patients had a higher number of inpatient stays, spent more time in the hospital both during their illness and during the last month of their life, and were more likely to die in the hospital when compared to deceased patients with CNS neoplasms and with other diagnoses. Our findings highlight the disruptive effects of treatment that are likely to have a great impact on families' daily life, that go beyond exclusively focusing on side effects, and that needs to be taken into account by the treating staff.
Identifier
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<a href="http://doi.org/10.1111/ecc.12879" target="_blank" rel="noreferrer noopener">10.1111/ecc.12879</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).
2018
Acheson E
Adaptation
Adolescent
burden of treatment
Central Nervous System Neoplasms/therapy
Child
Death
Elger B S
European Journal of Cancer Care (Engl)
Family
Female
Hengartner H
Hospitalization
Humans
Infant
inpatient stays
Kuhne T
Length Of Stay
leukaemia
Leukemia/therapy
Male
Medical Records
Neoplasms/*therapy
Newborn
Oncology 2019 List
Paediatric oncology
Place Of Death
Preschool
Psychological
Rakic M
Retrospective Studies
Rischewski J
Rost M
Switzerland
Terminal Care
Wangmo T
-
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 2020 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 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2019.10.039" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpeds.2019.10.039</a>
Dublin Core
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Title
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Center, Gestational Age, and Race Impact End-of-Life Care Practices at Regional Neonatal Intensive Care Units
Publisher
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Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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article; Black person; cause of death; central nervous system; child; cohort analysis; controlled study; do not resuscitate order; drug withdrawal; female; gestational age; human; infant; injury; life sustaining treatment; major clinical study; male; Neonatal Intensive Care Unit; newborn; newborn death; retrospective study; terminal care
Creator
An entity primarily responsible for making the resource
Fry J T; Matoba N; Datta A; DiGeronimo R; Coghill C H; Natarajan G; Brozanski B; Leuthner S R; Niehaus J Z; Schlegel A B; Shah A; Zaniletti I; Bartman T; Murthy K; Sullivan K M; Asselin J; Durand D; Dykes F; Evans J; Padula M; Pallotto E; Grover T; Piazza A; Reber K; Short B
Description
An account of the resource
Objective: To assess the impact of intercenter variation and patient factors on end-of-life care practices for infants who die in regional neonatal intensive care units (NICUs). Study design: We conducted a retrospective cohort analysis using the Children's Hospital Neonatal Database during 2010-2016. A total of 6299 nonsurviving infants cared for in 32 participating regional NICUs were included to examine intercenter variation and the effects of gestational age, race, and cause of death on 3 end-of-life care practices: do not attempt resuscitation orders (DNR), cardiopulmonary resuscitation within 6 hours of death (CPR), and withdrawal of life-sustaining therapies (WLST). Factors associated with these practices were used to develop a multivariable equation.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpeds.2019.10.039" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2019.10.039</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).
2019
Article
Asselin J
Bartman T
Black person
Brozanski B
Cause Of Death
Central Nervous System
Child
Coghill C H
Cohort Analysis
Controlled Study
Datta A
DiGeronimo R
do not resuscitate order
Drug Withdrawal
Durand D
Dykes F
Evans J
February 2020 List
Female
Fry J T
Gestational Age
Grover T
Human
Infant
injury
Journal of Pediatrics
Leuthner S R
Life Sustaining Treatment
Major Clinical Study
Male
Matoba N
Murthy K
Natarajan G
Neonatal Intensive Care Unit
Newborn
Newborn Death
Niehaus J Z
Padula M
Pallotto E
Piazza A
Reber K
Retrospective Study
Schlegel A B
Shah A
Short B
Sullivan K M
Terminal Care
Zaniletti I
-
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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January 2020 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 2020 List
URL Address
<a href="http://doi.org/10.1177/1178632919879422" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1178632919879422</a>
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Title
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The Effects of Chronic Disease on Ambulatory Care–Sensitive Hospitalizations for Children or Youth
Publisher
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Health Services Insights
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Adolescence; Adolescent; Age Factors; Ambulatory Care -- In Adolescence; Ambulatory Care -- In Infancy and Childhood; Child; Chronic Disease; Confidence Intervals; Cross Sectional Studies; Data Analysis Software; Descriptive Statistics; Female; Hospitalized; Human; Infant; Logistic Regression; Male; Models; Newborn; Odds Ratio; Patient Discharge; Post Hoc Analysis; Preschool; Probability; Race Factors; ROC Curve; Sex Factors; Statistical; Texas
Creator
An entity primarily responsible for making the resource
Phillips C D; Truong C; Kum H C; Nwaiwu O; Ohsfeldt R
Description
An account of the resource
Considerable research has focused on hospitalizations for ambulatory care–sensitive conditions (ACSHs), but little of that research has focused on the role played by chronic disease in ACSHs involving children or youth (C/Y). This research investigates, for C/Y, the effects of chronic disease on the likelihood of an ACSH. The database included 699 473 hospital discharges for individuals under 18 in Texas between 2011 and 2015. Effects of chronic disease, individual, and contextual factors on the likelihood of a discharge involving an ACSH were estimated using logistic regression. Contrary to the results for adults, the presence of chronic diseases or a complex chronic disease among children or youth was protective, reducing the likelihood of an ACSH for a nonchronic condition. Results indicate that heightened ambulatory care received by C/Y with chronic diseases is largely protective. Two of more chronic conditions or at least one complex chronic condition significantly reduced the likelihood of an ACSH.
Identifier
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<a href="http://doi.org/10.1177/1178632919879422" target="_blank" rel="noreferrer noopener">10.1177/1178632919879422</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
Adolescence
Adolescent
Age Factors
Ambulatory Care -- In Adolescence
Ambulatory Care -- In Infancy and Childhood
Child
Chronic Disease
Confidence Intervals
Cross Sectional Studies
Data Analysis Software
Descriptive Statistics
Female
Health Services Insights
Hospitalized
Human
Infant
January 2020 List
Kum H C
Logistic Regression
Male
Models
Newborn
Nwaiwu O
Odds Ratio
Ohsfeldt R
Patient Discharge
Phillips C D
Post Hoc Analysis
Preschool
Probability
Race Factors
ROC Curve
Sex Factors
statistical
Texas
Truong C
-
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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January 2020 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 2020 List
URL Address
<a href="http://doi.org/10.1590/0034-7167-2018-0842" target="_blank" rel="noreferrer noopener">http://doi.org/10.1590/0034-7167-2018-0842</a>
Dublin Core
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Title
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Perception of health professionals about neonatal palliative care
Publisher
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Revista Brasileira de Enfermagem
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Attitude of Health Personnel; Content Analysis; Human; Infant; Intensive Care Units; Neonatal; Newborn; Palliative Care -- In Infancy and Childhood; Phenomenological Research; Portugal; Professional-Patient Relations; Qualitative Studies; Quality of Life
Creator
An entity primarily responsible for making the resource
Batoca Silva E M; Machado Silva M J; Marques Silva D
Description
An account of the resource
Objective: To identify the perception of health professionals about neonatal palliative care. Method: A phenomenological qualitative study, a non-probabilistic sample, of 15 health professionals from a neonatal intensive care unit in northern Portugal. Content analysis was performed. Results: Despite their lack of training in palliative care, the health professionals showed concern for the dignity, quality of life and comfort of the newborn and family. They expressed emotional and relational difficulties in following the trajectories of serious illness and death and in the ethical decisions regarding the end-of-life. Conclusion: It is emphasized that professionals are sensitive to pain and suffering and reveal dedicated and committed in the care of the newborn and family. They are available to train and embrace the current challenges posed by the constitution of pediatric palliative care teams and to help achieve an organizational culture that advances in such care. Objetivo: Identificar la percepción de los profesionales del equipa de la salud sobre los cuidados paliativos neonatales. Método: Estudio cualitativo fenomenológico, muestra no probabilística de 15 profesionales de la salud de una unidad neonatal del norte de Portugal. Se realizó análisis de contenido. Resultados: A pesar de la falta de formación en cuidados paliativos, los profesionales revelaron preocupación por la dignidad, calidad de vida y confort del recién nacido y su familia. Expresaron dificultades emocionales y relacionales para acompañar las trayectorias de la enfermedad severa y de la muerte y para lidiar con la decisión ética. Conclusión: Debemos destacar que los profesionales son sensibles al dolor, sufrimiento y se muestran dedicados y comprometidos en el cuidado del recién nacido y la familia. Están disponibles para participar en formación y abrazar los desafíos actuales que pasan por la constitución de equipos de cuidados paliativos pediátricos y por lograr una cultura organizacional que permita el progreso de esos cuidados. Objetivo: Identificar a percepção dos profissionais da equipa de saúde sobre os cuidados paliativos neonatais. Método: Estudo qualitativo fenomenológico, amostra não probabilística de 15 profissionais da equipa de saúde de uma unidade de cuidados intensivos neonatal, do norte de Portugal. Realizou-se análise de conteúdo. Resultados: Apesar da falta de formação em cuidados paliativos, os profissionais revelaram preocupação com a dignidade, qualidade de vida e conforto do recém-nascido e família. Expressaram dificuldades emocionais e relacionais no acompanhar as trajetórias de doença grave e morte e a nível da decisão ética no final de vida. Conclusão: Salientamos que os profissionais estão sensíveis à dor e sofrimento e mostram-se dedicados e comprometidos no cuidar do recém-nascido e família. Mostram-se disponíveis para fazer formação e abraçar os desafios atuais que passam pela constituição de equipas de cuidados paliativos pediátricos e o alcançar de uma cultura organizacional que progrida nesses cuidados.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1590/0034-7167-2018-0842" target="_blank" rel="noreferrer noopener">10.1590/0034-7167-2018-0842</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).
2019
Attitude Of Health Personnel
Batoca Silva E M
Content Analysis
Human
Infant
Intensive Care Units
January 2020 List
Machado Silva M J
Marques Silva D
Neonatal
Newborn
Palliative Care -- In Infancy and Childhood
Phenomenological Research
Portugal
Professional-patient Relations
Qualitative Studies
Quality Of Life
Revista Brasileira de Enfermagem
-
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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December 2019 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
December 2019 List
URL Address
<a href="http://doi.org/10.1097/01.ccm.0000551171.15113.a3" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.ccm.0000551171.15113.a3</a>
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Title
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Palliative care allocation among critically ill children is highly variable in the United States
Publisher
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Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
artificial ventilation; child; cohort analysis; conference abstract; controlled study; critically ill patient; female; hospitalization; household income; human; infant; insurance; length of stay; major clinical study; male; morbidity; mortality; multicenter study; neonatal intensive care unit; newborn; palliative therapy; race; resource allocation; retrospective study; suburban area; United States
Creator
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O'Keefe S; Maddux A; Bennett K; Youngwerth J; Czaja A
Description
An account of the resource
Learning Objectives: Palliative Care (PC) is a scarce resource. Little is known about its allocation among critically ill children. Previously proposed criteria may help identify children who may benefit from PC. Method(s): This is a retrospective cohort study of patients aged <40 years requiring ICU admission (excluding neonatal ICU) among 51 children's hospitals from 2010-2017. Hospitalizations were categorized into 3 mutually exclusive groups: 1. PICU based criteria adapted from previously published criteria (PC-ICU) 2. Additional Criteria (AC = chronic complex condition not in PCICU) 3. No Criteria (NC). Characteristics, outcomes and PC use (based on ICD administrative charges) were compared using chi2 or kruskal-wallis. We also explored PC patterns over time. Result(s): 93499 subjects with 114510 hospitalizations had >= 1 ICU admission. 15% subjects had >1 hospitalization. Median age at admission was 19 months (IQR 2-117). 56%, 39% and 5% of hospitalizations met PC-ICU, AC and NC criteria respectively. PC-ICU admissions had higher severity of illness, number of procedures, need for mechanical ventilation, CPR, mechanical ventilation days, length of stay, charges and mortality (p<=0.001). PC consult was present in 4.5% of hospitalizations, higher among PC-ICU than AC and NC groups (5.8%, 2.9% and 0.3% respectively, p<=0.001). Median age of children receiving PC was younger in PC-ICU (34 months v 52 and 59 months in AC and NC groups respectively). PC use was slightly higher among patients living in urban/suburban areas (4.5% v 4%, p<0.004), with governmentbased insurance (4.7% v 4%, p<=0.0001) and of non-white race (4.6% v 4.3%, p<0.04). Household income did not differ between PC and no-PC (p= 0.6). PC use increased steadily from 2010-2017 from 1% to 6.7%, with greatest change observed in PC-ICU group (1.4% to 9%), followed by the AC group (1% to 4.7%) and with little change in NC group (0 to 0.5%). PC use varied among institutions ranging from 0-44% in PC-ICU, 0-12% in AC and 0-2% in NC groups respectively. Conclusion(s): National PC use remain low but has increased over time, especially among those meeting PC-ICU criteria who are at high risk of morbidity and mortality. However, PC use varies substantially across ICUs and across certain demographic groups. Future research to understand the impact of PC for critically ill children could help optimize resource allocation.
Identifier
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<a href="http://doi.org/10.1097/01.ccm.0000551171.15113.a3" target="_blank" rel="noreferrer noopener">10.1097/01.ccm.0000551171.15113.a3</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).
2019
Artificial Ventilation
Bennett K
Child
Cohort Analysis
conference abstract
Controlled Study
Critical Care Medicine
Critically Ill Patient
Czaja A
December 2019 List
Female
Hospitalization
household income
Human
Infant
Insurance
Length Of Stay
Maddux A
Major Clinical Study
Male
Morbidity
Mortality
Multicenter Study
Neonatal Intensive Care Unit
Newborn
O'Keefe S
Palliative Therapy
race
Resource Allocation
Retrospective Study
suburban area
United States
Youngwerth J
-
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
December 2019 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
December 2019 List
URL Address
<a href="http://doi.org/10.1136/bmjpo-2019-000547" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjpo-2019-000547</a>
Dublin Core
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Title
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Access to paediatric palliative care in children and adolescents with complex chronic conditions: A retrospective hospital-based study in Brussels, Belgium
Publisher
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BMJ Paediatrics Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adolescent; article; Belgium; cardiovascular disease; child; chronic disease; complex chronic condition; congenital disorder; data base; female; gastrointestinal disease; genetic disorder; groups by age; health care access; hematologic disease; hospital; hospital admission; hospitalized adolescent; hospitalized child; human; Icd-9; immune deficiency; infant; length of stay; major clinical study; male; malignant neoplasm; metabolic disorder; morbidity; neurologic disease; newborn; palliative therapy; patient care; patient referral; pediatric patient; pediatric ward; priority journal; respiratory tract disease; retrospective study; urinary tract disease
Creator
An entity primarily responsible for making the resource
Friedel M; Gilson A; Bouckenaere D; Brichard B; Fonteyne C; Wojcik T; De Clercq E; Guillet A; Mahboub A; Lahaye M; Aujoulat I
Description
An account of the resource
BACKGROUND: Paediatric complex chronic conditions (CCCs) are life-limiting conditions requiring paediatric palliative care, which, in Belgium, is provided through paediatric liaison teams (PLTs). Like the number of children and adolescents with these conditions in Belgium, their referral to PLTs is unknown. OBJECTIVES: The aim of the study was to identify, over a 5-year period (2010-2014), the number of children and adolescents (0-19 years) living with a CCC, and also their referral to PLTs. METHODS: International Classification of Disease codes (ICD-9) corresponding to a CCC, as described by Feudtner et al, and national registration numbers were extracted from the databases of all hospitals (n=8) and PLTs (n=2) based in the Brussels region. Aggregated data and pseudonymised national registration number were transmitted to the research team by a Trusted Third Party (eHealth). Ages and diagnostic categories were calculated using descriptive statistics. RESULTS: Over 5 years (2010-2014) in the Brussels region, a total of 22 721 children/adolescents aged 0-19 years were diagnosed with a CCC. Of this number, 22 533 were identified through hospital registries and 572 through PLT registries. By comparing the registries, we found that of the 22 533 children/adolescents admitted to hospital, only 384 (1.7%) were also referred to a PLT. CONCLUSION: In Belgium, there may be too few referrals of children and adolescents with CCC to PLTs that ensure continuity of care.
Identifier
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<a href="http://doi.org/10.1136/bmjpo-2019-000547" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2019-000547</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).
2019
Adolescent
Article
Aujoulat I
Belgium
BMJ Paediatrics Open
Bouckenaere D
Brichard B
Cardiovascular Disease
Child
Chronic Disease
complex chronic condition
congenital disorder
Data Base
De Clercq E
December 2019 List
Female
Fonteyne C
Friedel M
gastrointestinal disease
Genetic Disorder
Gilson A
groups by age
Guillet A
Health Care Access
hematologic disease
Hospital
Hospital Admission
hospitalized adolescent
Hospitalized Child
Human
Icd-9
immune deficiency
Infant
Lahaye M
Length Of Stay
Mahboub A
Major Clinical Study
Male
Malignant Neoplasm
Metabolic Disorder
Morbidity
Neurologic Disease
Newborn
Palliative Therapy
Patient Care
Patient Referral
pediatric patient
pediatric ward
Priority Journal
Respiratory Tract Disease
Retrospective Study
urinary tract disease
Wojcik T
-
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Title
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November 2019 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.
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November 2019 List
URL Address
<a href="http://doi.org/10.1038/jp.2017.160" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/jp.2017.160</a>
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Parental assessment of comfort in newborns affected by life-limiting conditions treated by a standardized neonatal comfort care program
Publisher
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Journal of Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Palliative Care/mt [Methods]; Parents/px [Psychology]; Patient Comfort/st [Standards]; Adult; Female; Humans; Infant; Intensive Care; Male; Neonatal/og [Organization & Administration]; New York; Newborn; Patient Care Team/og [Organization & Administration]; Practice Guidelines as Topic; Prospective Studies; Qualitative Research; Surveys and Questionnaires; Young Adult
Creator
An entity primarily responsible for making the resource
Parravicini E; Daho M; Foe G; Steinwurtzel R; Byrne M
Description
An account of the resource
OBJECTIVE: To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program. STUDY DESIGN: Participants were parents (n=35 families) who elected comfort care for their newborns diagnosed with life-limiting conditions. Standardized comfort measures including family/infant bonding, warmth, nutrition/hydration and pain/discomfort management were provided to all infants. Parents consented to receive a questionnaire with quantitative response options and open-ended questions. RESULTS: Forty-two questionnaires (26 from mothers and 16 from fathers) were collected and analyzed. Most parents reported that their child was treated with respect, in a caring, peaceful and non-invasive environment. To the question 'Do you think that overall your baby received comfort' mode response was 'always'. CONCLUSION: Parents of infants with life-limiting conditions perceive that their babies experience comfort as a result of the care provided by the standardized Neonatal Comfort Care Program.
Identifier
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<a href="http://doi.org/10.1038/jp.2017.160" target="_blank" rel="noreferrer noopener">10.1038/jp.2017.160</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).
2018
Adult
Byrne M
Daho M
Female
Foe G
Humans
Infant
Intensive Care
Journal Of Perinatology
Male
Neonatal/og [Organization & Administration]
New York
Newborn
November 2019 List
Palliative Care/mt [methods]
Parents/px [psychology]
Parravicini E
Patient Care Team/og [Organization & Administration]
Patient Comfort/st [Standards]
Practice Guidelines As Topic
Prospective Studies
Qualitative Research
Steinwurtzel R
Surveys And Questionnaires
Young Adult
-
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Title
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November 2019 List
Text
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<a href="http://doi.org/10.1038/s41372-019-0490-y" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41372-019-0490-y</a>
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Title
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Early palliative care reduces stress in parents of neonates with congenital heart disease: validation of the "Baby, Attachment, Comfort Interventions"
Publisher
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Journal of perinatology : official journal of the California Perinatal Association.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
comfort; congenital heart disease; mental stress; palliative therapy; anxiety; article; child parent relation; cohort analysis; controlled study; emotional attachment; female; health care quality; human; infant; male; newborn; prospective study
Creator
An entity primarily responsible for making the resource
Callahan K; Steinwurtzel R; Brumarie L; Schechter S; Parravicini E
Description
An account of the resource
OBJECTIVE: To test our hypothesis that an innovative method of early palliative care called "Baby, Attachment, Comfort Interventions" reduces psychological distress in parents of neonates with congenital heart disease. STUDY DESIGN: Prospective cohort study of parents of neonates with congenital heart disease. Distress was evaluated at admission and discharge using Neonatal Unit Parental Stressor Scale and Depression Anxiety Stress Index-21. Control parents received standard of care. Intervention parents received interdisciplinary interventions aimed at improving neonatal comfort and parenting experience.
Identifier
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<a href="http://doi.org/10.1038/s41372-019-0490-y" target="_blank" rel="noreferrer noopener">10.1038/s41372-019-0490-y</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).
2019
anxiety
Article
Brumarie L
Callahan K
Child Parent Relation
Cohort Analysis
Comfort
Congenital Heart Disease
Controlled Study
emotional attachment
Female
Health Care Quality
Human
Infant
Journal of perinatology : official journal of the California Perinatal Association.
Male
Mental Stress
Newborn
November 2019 List
Palliative Therapy
Parravicini E
Prospective Study
Schechter S
Steinwurtzel R
-
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Title
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September 2019 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
September 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0292" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0292</a>
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Title
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Implications of Pediatric Palliative Consultation for Intensive Care Unit Stay
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
2019
Subject
The topic of the resource
adolescent; adult; article; child; cohort analysis; female; human; major clinical study; male; retrospective study; controlled study; childhood cancer; pediatric hospital; Caucasian; length of stay; palliative therapy; pediatric intensive care unit; child hospitalization; confidence interval; demography; health insurance; hospital admission; infant; newborn; patient referral
Creator
An entity primarily responsible for making the resource
Rossfeld ZM; Miller R; Tumin D; Tobias JD; Humphrey LM
Description
An account of the resource
Background: The impact of specialty pediatric palliative care (PPC) on intensive care unit (ICU) length of stay for children is unclear. Objective: To estimate the impact of PPC consultation by analyzing ICU stay as a dynamic outcome over the course of hospitalization. Patients and Methods: Retrospective cohort study of children hospitalized with diagnoses suggested as referral triggers for PPC at a large academic children's hospital. We assessed ICU stay according to PPC consultation and, using a patient-day analysis, applied multivariable mixed effects logistic regression to predict the odds of being in the ICU on a given day. Results: The analytic sample included 777 admissions (11,954 hospital days), of which 100 admissions (13%) included PPC consultation. Principal patient demographics were age 8 ± 6 years, 55% male sex, 71% white race, and 52% commercial insurance. Cardiac diagnoses were most frequent (29%) followed by gastrointestinal (22%) and malignant (20%) conditions. Although total ICU stay was longer for admissions, including PPC consultation (compared to admissions where PPC was not consulted), the odds of being in the ICU on a given day were reduced by 79% after PPC consultation (odds ratio [OR] = 0.21; 95% confidence interval [CI]: 0.13-0.34; p < 0.001) for children with cancer and 85% (OR = 0.15; 95% CI: 0.08-0.26; p < 0.001) for children with nononcologic conditions. Conclusions: Among children hospitalized with a diagnosis deemed eligible for specialty PPC, the likelihood of being in the ICU on a given day was strongly reduced after PPC consultation, supporting the value of PPC.
Identifier
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<a href="http://doi.org/10.1089/jpm.2018.0292" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0292</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).
2019
Adolescent
Adult
Article
Caucasian
Child
child hospitalization
Childhood Cancer
Cohort Analysis
confidence interval
Controlled Study
Demography
Female
health Insurance
Hospital Admission
Human
Humphrey LM
Infant
Journal of Palliative Medicine
Length Of Stay
Major Clinical Study
Male
Miller R
Newborn
Palliative Therapy
Patient Referral
Pediatric Hospital
Pediatric Intensive Care Unit
Retrospective Study
Rossfeld ZM
September 2019 List
Tobias JD
Tumin D
-
Dublin Core
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Title
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September 2019 List
Text
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Citation List Month
September 2019 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2017-314256" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2017-314256</a>
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Title
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Infant deaths from congenital anomalies: novel use of Child Death Overview Panel data
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Female; Infant; Male; Humans; Retrospective Studies; Newborn; congenital anomaly; ethnicity; Infant Death; infant mortality; Cause of Death; Congenital Abnormalities/mortality; Consanguinity; Death Certificates; Disabled Children; England/epidemiology; Ethnic Groups/statistics & numerical data; Infant Mortality/ethnology; Maternal Age
Creator
An entity primarily responsible for making the resource
Firth C; Petherick E; Oddie SJ
Description
An account of the resource
OBJECTIVE: We aimed to assess Child Death Overview Panel (CDOP) data validity, and cause of death classification, by comparison with information from a local birth cohort study (Born in Bradford, BiB), and another cause of death coding system (causes of death and associated conditions-CODAC). We then aimed to use CDOP data to calculate ethnic-specific infant mortality rates (IMRs), and compare characteristics of infants who died of congenital anomalies (CA) with those who died from other causes (non-CA). DESIGN: Retrospective cohort study. SETTING: Bradford Metropolitan District. PATIENTS: All infant deaths, 2008 to 2013. MAIN OUTCOME MEASURES: Infant mortality rates from CA and non-CA causes. RESULTS: 315 infant deaths were included, 56 of whom were BiB recruits. Agreement between CDOP and BiB was moderate to perfect for all characteristics except ethnicity, which showed weak agreement (kappa=0.58). The same deaths (27/56) were classified as CA by CDOP and CODAC. IMRs (per 1000 live births, 2009-2013) were highest in Pakistani infants (all causes 9.8, CA cause 5.5) compared with white British (all causes 4.3, CA cause 1.3) and other infants (all causes 5.1, CA cause 1.4). In multivariate analysis, infants who died of CA cause were more likely to have been born at term (OR 3.18) and to consanguineous parents (OR 3.28) than infants who died of non-CA cause. CONCLUSIONS: Excess Pakistani mortality appears to be partly explained by an excess of deaths from CA, which in this population appears associated with a greater prevalence of consanguinity.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2017-314256" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-314256</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).
2018
Archives of Disease in Childhood
Cause Of Death
Congenital Abnormalities/mortality
congenital anomaly
Consanguinity
Death Certificates
Disabled Children
England/epidemiology
Ethnic Groups/statistics & numerical data
Ethnicity
Female
Firth C
Humans
Infant
Infant Death
Infant Mortality
Infant Mortality/ethnology
Male
Maternal Age
Newborn
Oddie SJ
Petherick E
Retrospective Studies
September 2019 List
-
Dublin Core
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Title
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July 2019 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
July 2019 List
URL Address
<a href="http://doi.org/10.1542/peds.2018-0478J" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1542/peds.2018-0478J</a>
Dublin Core
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Title
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Why Do Neonatologists in Scandinavian Countries and the Netherlands Make Life-and-death Decisions So Different?
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Infant; Humans; Attitude of Health Personnel; Clinical Decision-Making/mt [Methods]; Infant Care/mt [Methods]; Infant Care/px [Psychology]; Neonatologists/px [Psychology]; Infant Care/st [Standards]; Neonatologists/st [Standards]; Netherlands/ep [Epidemiology]; Scandinavian and Nordic Countries/ep [Epidemiology]; Survival Rate/td [Trends]; Withholding Treatment/st [Standards]; Newborn
Creator
An entity primarily responsible for making the resource
Verhagen A A E
Description
An account of the resource
An examination of the policies regarding the care of extremely premature newborns reveals unexpected differences between Scandinavian countries and the Netherlands. Three topics related to decision-making at the beginning and at the end of life are identified and discussed.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2018-0478J" target="_blank" rel="noreferrer noopener">10.1542/peds.2018-0478J</a>
2018
Attitude Of Health Personnel
Clinical Decision-Making/mt [Methods]
Humans
Infant
Infant Care/mt [Methods]
Infant Care/px [Psychology]
Infant Care/st [Standards]
July 2019 List
Neonatologists/px [psychology]
Neonatologists/st [Standards]
Netherlands/ep [Epidemiology]
Newborn
Pediatrics
Scandinavian and Nordic Countries/ep [Epidemiology]
Survival Rate/td [Trends]
Verhagen A A E
Withholding Treatment/st [Standards]
-
Dublin Core
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Title
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February 2019 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 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.281" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.281</a>
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Title
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Memory-Making in Neonatal End-of-Life Care
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
The topic of the resource
infant; death; newborn; grounded theory; neonatal intensive care unit; conference abstract; human; controlled study; terminal care; interview; staff; memory; health practitioner
Creator
An entity primarily responsible for making the resource
Thornton R; Harms L; Nicholson P
Description
An account of the resource
Background: The loss of a child in the first hours or days of life is a profoundly distressing event for parents. Provision of appropriate psycho-social care for bereaved parents is critical. Current perinatal and neonatal palliative care guidelines recommend supporting parents to create memories with their baby. However, little is currently known about the impact of these activities on parents' experience of loss.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.281" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.281</a>
2018
conference abstract
Controlled Study
Death
February 2019 List
Grounded Theory
Harms L
health practitioner
Human
Infant
Interview
Journal of Pain and Symptom Management
Memory
Neonatal Intensive Care Unit
Newborn
Nicholson P
Staff
Terminal Care
Thornton R
-
Dublin Core
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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
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Title
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Neonatal Palliative Care in the United States Deep South: Exploration of Patterns of Care and Health Disparities
Publisher
An entity responsible for making the resource available
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
The topic of the resource
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
-
Dublin Core
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Title
A name given to the resource
2018 Developing World 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
Developing World 2018 List
URL Address
<a href="http://doi.org/10.1097/JPN.0000000000000361" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1097/JPN.0000000000000361</a>
Dublin Core
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Title
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Brazilian Neonatal Nurses' Palliative Care Experiences
Publisher
An entity responsible for making the resource available
The Journal of perinatal & neonatal nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
quality of life; infant; grief; newborn; Brazil; vulnerable population; education; palliative therapy; thematic analysis; human experiment; genetic transcription; neonatal intensive care unit; human; article; female; male; controlled study; interview; clinical article; neonatal nurse; convenience sample; exploratory research; quality of nursing care; registered nurse; teaching hospital
Creator
An entity primarily responsible for making the resource
de Castro de Oliveira F; Cleveland LM; Darilek U; Borges Silva AR; Carmona EV
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/JPN.0000000000000361" target="_blank" rel="noreferrer noopener">10.1097/JPN.0000000000000361</a>
2018
Article
Borges Silva AR
Brazil
Carmona EV
Cleveland LM
Clinical Article
Controlled Study
Convenience Sample
Darilek U
de Castro de Oliveira F
Developing World 2018 List
Education
Exploratory Research
Female
genetic transcription
Grief
Human
Human Experiment
Infant
Interview
Male
Neonatal Intensive Care Unit
Neonatal Nurse
Newborn
Palliative Therapy
Quality Of Life
quality of nursing care
registered nurse
teaching hospital
The Journal Of Perinatal & Neonatal Nursing
Thematic Analysis
vulnerable population