1
40
18
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Title
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February 2024 List
Text
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February List 2024
URL Address
<a href="http://doi.org/10.1177/10497323231201023" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/10497323231201023</a>
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Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study
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Qualitative Health Research
Date
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2023
Subject
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child; article; controlled study; human; prematurity; palliative therapy; child parent relation; grief; uncertainty; bereavement; ethics; congenital malformation; morality; neonatal intensive care unit; infant; decision making; medical care; narrative
Creator
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Lakhani J; Mack C; Kunyk D; van Manen M
Description
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Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities can turn what was hoped to be a very exciting moment in a family's life into one of despair and grief. There are many infants that not only do not survive but also have a medicalized death necessitating complex decision-making, weighing quality versus duration of life. We can learn from the stories of parents who chose palliative care for their children. In this narrative inquiry study, we elicited bereaved parents' stories and reflections on the lives of their children and the care they received in the NICU. From a narrative ethics perspective, their stories speak to normative aspects of parenting, decision-making, and receiving medical care that affect their moral sense-making of their NICU experiences as well as their longer-term living with the loss of their children. Their stories express the importance of having had meaningful time with their children, maintaining direct and frequent communication, acknowledging uncertainty, and emphasizing compassion as methods of providing support to parents as they navigate their bereavement.
Identifier
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<a href="http://doi.org/10.1177/10497323231201023" target="_blank" rel="noreferrer noopener">10.1177/10497323231201023</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
Bereavement
Child
Child Parent Relation
Congenital Malformation
Controlled Study
Decision Making
Ethics
February List 2024
Grief
Human
Infant
Kunyk D
Lakhani J
Mack C
Medical Care
Morality
Narrative
Neonatal Intensive Care Unit
Palliative Therapy
Prematurity
Qualitative Health Research
Uncertainty
van Manen M
-
Dublin Core
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Title
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November 2023 List
Text
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November List 2023
URL Address
<a href="http://doi.org/10.1111/apa.16901" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.16901</a>
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Title
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More qualitative research is needed to unpack the complexities of resuscitation decisions for preterm infants
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Acta Paediatrica
Date
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2023
Subject
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Infant; human; palliative therapy; gestational age; medical decision making; practice guideline; Infant Premature; qualitative research; prematurity; pediatric patient; resuscitation; letter
Creator
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Cavolo A; Gastmans C
Description
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We read with interest Sriraman et al's (2023)1 response to our article ‘Resuscitation thresholds were seen as guidance by Belgian neonatologists and other relevant factors were included in decision-making’.2 We appreciate that other institutions use an integrative approach to resuscitation decisions for extremely premature infants, one that takes into proper account other prognostic factors as well as parents' opinion. We also find it alarming that so many neonatologists have negative attitudes towards resuscitation of infants at 22 and 23 weeks. We agree that it is acceptable to advise palliative care at these gestational ages as mortality and morbidity remain high, but parents should be involved in the decision-making and they should be allowed to opt for resuscitation. Physicians' negative attitudes might hinder true shared decision-making. In this regard, Sriraman et al indirectly identify another underlying issue related to our understanding of resuscitation decisions for premature infants. We have plenty of studies investigating physicians' attitudes towards resuscitation of these infants. However, the vast majority of empirical research on this topic is quantitative in nature.3 Quantitative studies are well suited to elicit general trends, in this case, whether on average physicians prefer to resuscitate at 22 and 23 weeks, but they are ill-suited to uncover the complexities behind such trend. In other terms, quantitative methods provide a valuable description of a certain phenomenon, but they cannot explain why things are the way they are. Applied to the context of resuscitation decisions for preterm infants, the lack of qualitative studies means that we know that physicians prefer palliative care at the lowest gestational ages, but we do not know why. On top of that, there is also little research on how physicians make resuscitation decisions in practice, meaning that we also do not know to what extent attitudes and practice correspond. As Sriraman et al pointed out we need to understand whether the fact that physicians prefer not to resuscitate at the lowest gestational ages means that they refuse all resuscitation requests. We also need to understand what factors influence these decisions. This knowledge is not only necessary to better understand this complex and ethically challenging decision-making, but it is also necessary to understand how to improve this decision-making. It can also offer important insight to draft guidelines that can better guide parents and healthcare providers through this process. Hence, we welcome the research that Sriraman's team is planning and we are looking forward to the results.
Identifier
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<a href="http://doi.org/10.1111/apa.16901" target="_blank" rel="noreferrer noopener">10.1111/apa.16901</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
Acta Paediatrica, International Journal of Paediatrics
Cavolo A
Gastmans C
Gestational Age
Human
Infant
Infant Premature
Letter
Medical Decision Making
November List 2037
Palliative Therapy
pediatric patient
Practice Guideline
Prematurity
Qualitative Research
Resuscitation
-
Dublin Core
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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/10.3390/children10081407" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10081407</a>
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Title
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Butterflies and Ribbons: Supporting Families Experiencing Perinatal Loss in Multiple Gestation
Publisher
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Children (Basel)
Date
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2023
Subject
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palliative care; communication; neonatology; prematurity; nursing; Pregnancy; parental perspectives; medical education; twins; perinatal loss; Butterflies; multiple pregnancy; triplets
Creator
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Boutillier B; Embleton ND; Belanger S; Bigras-Mercier A; Larone Juneau A; Barrington KJ; Janvier A
Description
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Introduction: In neonatology, multiple pregnancies are common. Unfortunately, it is not rare for one baby to die. Communication with parents in these circumstances has been demonstrated to be sub-optimal. Methods: Two educational programs were evaluated with pre- and post-course surveys, questionnaires administered to participants, and audits. Results: In the online Butterfly project (UK; n = 734 participants), all participants reported that the training exceeded or met their expectations, 97% reported they learned new skills, and 48% had already applied them. Participants expressed gratitude in their open-ended answers: "I feel a lot more confident in supporting parents in this situation". In the Ribbon project (workshop for neonatal clinicians, Quebec; n = 242), 97% were satisfied with the training and reported feeling more comfortable caring for bereaved parents. Knowledge improved pre-post training. Audits revealed that 100% of cases were identified on the incubator and the baby's/babies' admission card, all changed rooms after the death of their co-twin/triplet, and all had the name of their co-twin/triplet on the discharge summary. All clinicians (55) knew what the ribbon symbol meant when asked during surprise audits at the bedside. Conclusion: Different educational strategies to optimize communication with families after the perinatal loss of a co-twin are appreciated and have a positive impact.
Identifier
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<a href="http://doi.org/10.3390/children10081407" target="_blank" rel="noreferrer noopener">10.3390/children10081407</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
Barrington KJ
Bélanger S
Bigras-Mercier A
Boutillier B
Butterflies
Children (Basel)
Communication
Embleton ND
Janvier A
Larone Juneau A
Medical Education
multiple pregnancy
Neonatology
Nursing
October List 2047
Palliative Care
Parental Perspectives
Perinatal Loss
Pregnancy
Prematurity
triplets
Twins
-
Dublin Core
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Title
A name given to the resource
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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Citation List Month
March List 2023
URL Address
<a href="http://doi.org/10.3390/children10010046" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10010046</a>
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"We Absolutely Had the Impression That It Was Our Decision"-A Qualitative Study with Parents of Critically Ill Infants Who Participated in End-of-Life Decision Making
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Critical Illness; Decision Making; Infant; parental involvement; prematurity; shared decision making (MeSH); withdrawing treatment; withholding treatment (MeSH)
Creator
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Beyer M F; Kuehlmeyer K; Mang P; Flemmer AW; Führer M; Marckmann G; de Vos M; Schouten ES
Description
An account of the resource
BACKGROUND: Guidelines recommend shared decision making (SDM) between neonatologists and parents when a decision has to be made about the continuation of life-sustaining treatment (LST). In a previous study, we found that neonatologists and parents at a German Level-III Neonatal Intensive Care Unit performed SDM to a variable but overall small extent. However, we do not know whether parents in Germany prefer an extent of more or sharing. METHODS: We performed a qualitative interview study with parents who participated in our first study. We analyzed the semi-structured interviews with qualitative content analysis according to Kuckartz. RESULTS: The participation in medical decision making (MDM) varied across cases. Overall, neonatologists and parents conducted SDM in most cases only to a small extent. All parents appreciated their experience independent of how much they were involved in MDM. The parents who experienced a small extent of sharing were glad that they were protected by neonatologists from having to decide, shielding them from a conflict of interest. The parents who experienced a large extent of sharing especially valued that they were able to fulfil their parental duties even if that meant partaking in a decision to forgo LST. DISCUSSION: Other studies have also found a variety of possibilities for parents to partake in end-of-life decision making (EOL-DM). Our results suggest that parents do not have a uniform preference for one specific decision-making approach, but rather different parents appreciate their individual experience regardless of the model for DM. CONCLUSION: SDM is apparently not a one-size-fits-all approach. Instead, neonatologists and parents have to adapt the decision-making process to the parents' individual needs and preferences for autonomy and protection. Therefore, SDM should not be prescribed as a uniform standard in medico-ethical guidelines, but rather as a flexible guidance for DM for critically ill patients in neonatology.
Identifier
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<a href="http://doi.org/10.3390/children10010046" target="_blank" rel="noreferrer noopener">10.3390/children10010046</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
Beyer M F
Children (Basel)
Critical Illness
de Vos M
Decision Making
Flemmer AW
Führer M
Infant
Kuehlmeyer K
Mang P
March List 2023
Marckmann G
Parental Involvement
Prematurity
Schouten ES
shared decision making (MeSH)
Withdrawing Treatment
withholding treatment (MeSH)
-
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Title
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June 2022 List
Text
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Citation List Month
June 2022 List
URL Address
<a href="http://doi.org/10.1016/j.siny.2022.101335" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.siny.2022.101335</a>
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Title
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Personalized support of parents of extremely preterm infants before, during and after birth
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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
2022
Subject
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Communication; Family Integrated Care; Parent; Peer-peer support; Personalization; Prematurity
Creator
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Haward MF; Luu TM; Pearce R; Janvier A
Description
An account of the resource
The emotional turmoil associated with extremely preterm birth is inescapable parents. How each parent handles the unexpected, makes sense of the unknown and learns to parent their child is uniquely personal. A rigid standardized approach to support families through their journey before and during neonatal intensive care disregards this individuality. This article reviews general concepts and practices that can be learned and applied by clinicians to promote resiliency and help parents cope adaptively. This review will describe how to personalize parenting support during the antenatal consultation and hospitalization for parents of extremely premature infants. To facilitate this, mindsets and care delivery models need to shift from inflexible standardized protocols to flexible guidelines that enable personalized communications, support structures and care delivery models tailored to each person’s characteristics, preferences, and values. Laurence did not expect this. He life used to be perfect: just married, new baby, happy family. Then it happened. Her membranes ruptured and here she was, being told she was in labor at 23 weeks. She was lost when she met the neonatologist; she felt that all she heard were the bad things that could happen to her baby including terrifying statistics about death and disability. This was horribly shocking, and nothing made sense in her mind. She kept thinking was “how did this happen?” Why did her body fail? It must have been her fault… she should have slept more and eaten better or maybe she was just too old… Or maybe it was the doctor’s fault for not listening to her when she had cramps 2 weeks earlier? Her husband kept telling her they would be OK, but she could not be positive. He was the optimistic one in the couple, he seemed to cope much better than her. He was in action mode, organizing child care for the other two children, but she felt paralyzed. This was not like her. What was going to happen to her, her marriage, her child, her dreams? How could she let all this happen? What could she had done to prevent this? In another part of the hospital, Clyde was born in the early morning hours. He had come into this world too early but somehow made it through the delivery despite Mel being told he might not. Mel didn’t really understand what had happened. They had given her some materials to read but the words were complicated to understand, the pictures were scary, and she could not concentrate. She was used to deal with difficulties, but not this one. She had been in foster homes since she was a child, then she lived on her own for a year. She turned 18 last week and has lived in a domestic violence shelter for the past 20 days. Clyde was attached to machines to help him breathe. He had wires all over his little body and alarms kept beeping while nurses did not seem to notice. Mel was afraid to get in the way of all the people at his bedside. She didn’t know what was happening and was embarrassed to ask. She felt like an intruder in her son’s room. When she had tried to touch Clyde, she was told: “He is sleeping, he needs to stay calm”. She was asked later if she wanted to hold him, but she was scared. What if she dropped him? What would she do, where would they go if he survived?
Identifier
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<a href="http://doi.org/10.1016/j.siny.2022.101335" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2022.101335</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
April 2022 List
Communication
Family Integrated Care
Haward MF
Janvier A
Luu TM
Parent
Pearce R
Peer-peer support
Personalization
Prematurity
Seminars in Fetal and Neonatal Medicine
-
Dublin Core
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Title
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March 2022 List
Text
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Citation List Month
March 2022 List
URL Address
<a href="http://doi.org/10.1186/s12911-021-01735-z" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12911-021-01735-z</a>
Dublin Core
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Title
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Digital decision aid for prenatal counseling in imminent extreme premature labor: development and pilot testing
Publisher
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BMC medical informatics and decision making
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Digital health; IPDAS; Neonatology; Obstetrics; Patient decision aid; Prematurity; Shared decision making
Creator
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van den Heuvel JFM; Hogeveen M; Lutke Holzik M; van Heijst AFJ; Bekker MN; Geurtzen R
Description
An account of the resource
BACKGROUND: In case of extreme premature delivery at 24 weeks of gestation, both early intensive care and palliative comfort care for the neonate are considered treatment options. Prenatal counseling, preferably using shared decision making, is needed to agree on the treatment option in case labor progresses. This article described the development of a digital decision aid (DA) to support pregnant women, partners and clinicians in prenatal counseling for imminent extreme premature labor. METHOD(S): This DA is developed following the International Patient Decision Aid Standards. The Dutch treatment guideline and the Dutch recommendations for prenatal counseling in extreme prematurity were used as basis. Development of the first prototype was done by expert clinicians and patients, further improvements were done after alpha testing with involved clinicians, patients and other experts (n=12), and beta testing with non-involved clinicians and patients (n=15). RESULT(S): The final version includes information, probabilities and figures depending on users' preferences. Furthermore, it elicits patient values and provides guidance to aid parents and professionals in making a decision for either early intensive care or palliative comfort care in threatening extreme premature delivery. CONCLUSION(S): A decision aid was developed to support prenatal counseling regarding the decision on early intensive care versus palliative comfort care in case of extreme premature delivery at 24 weeks gestation. It was well accepted by parents and healthcare professionals. Our multimedia, digital DA is openly available online to support prenatal counseling and personalized, shared decision-making in imminent extreme premature labor. Copyright © 2022. The Author(s).
Identifier
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<a href="http://doi.org/10.1186/s12911-021-01735-z" target="_blank" rel="noreferrer noopener">10.1186/s12911-021-01735-z</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
Bekker MN
BMC medical informatics and decision making
digital health
Geurtzen R
Hogeveen M
IPDAS
Lutke Holzik M
March 2022 List
Neonatology
obstetrics
Patient decision aid
Prematurity
shared decision making
van den Heuvel JFM
van Heijst AFJ
-
Dublin Core
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Title
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February 2022 List
Text
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Citation List Month
February 2022 List
URL Address
<a href="http://doi.org/10.1016/j.semperi.2021.151549" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.semperi.2021.151549</a>
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Title
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Whom are we seeking to protect? Extremely preterm babies and moral distress
Publisher
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Seminars in Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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End-of-life care; Decision-making; Neonatal intensive care; Moral distress; Ethical confrontation; Prematurity
Creator
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Prentice TM; Gillam L; Davis PG; Janvier A
Description
An account of the resource
Advances in perinatal care bring with them ethical challenges and difficult questions. When should we provide life-sustaining interventions, and who should decide? Particularly at the edges of viability, some clinicians may feel required to provide a level of care that they believe is not in the patient's interests, resulting in moral distress. This article will discuss the complex nature of moral distress arising during the care of extremely preterm babies. It will describe the challenges and cognitive biases present when contemplating potential harms to the baby and recognize the possible costs to both healthcare provider and baby when moral distress arises. Both clinicians caring for extremely preterm babies and the families themselves can experience moral distress. This article argues that for clinicians, recognizing the range of possible sources of moral distress is vital in order to appropriately address moral distress. Moral distress may arise from a desire to protect the baby, but also from an impulse to protect oneself from the emotional burdens of care. Addressing moral distress requires reflection on the factual beliefs, experiences and personal values which lie behind the distress, both within one self in and in discussion with colleagues. Moral distress indicates that a situation is ethically challenging, but it does not necessarily mean that a wrong decision has been made.
Identifier
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<a href="http://doi.org/10.1016/j.semperi.2021.151549" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2021.151549</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
Davis PG
Decision-making
End-of-life Care
ethical confrontation
February 2022 List
Gillam L
Janvier A
Moral Distress
neonatal intensive care
Prematurity
Prentice TM
Seminars in Perinatology
-
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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August 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
August 2019 List
URL Address
<a href="http://doi.org/10.1186/s12887-019-1569-5" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12887-019-1569-5</a>
Dublin Core
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Title
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Decision-making at the limit of viability: The Austrian neonatal choice context
Publisher
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BMC Pediatrics
Date
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2019
Subject
The topic of the resource
article; human; palliative therapy; controlled study; shared decision making; systematic review; nervous system malformation; newborn; statistics; Austria; Choice context; Communication strategies; Decision-making; ethicist; framing bias; head; high income country; Limit of viability; neonatologist; neonatology; Neonatology; nicu; pregnancy; prematurity; semi structured interview
Creator
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Stanak M; Hawlik K
Description
An account of the resource
Background: We aimed to explore the shared decision-making context at the limit of viability (weeks 22-25 of gestation) through analyzing neonatologist's communication strategies with parents and their possible impact on survival and neurodevelopmental impairment (NDI) outcomes. Method(s): A mixed methods approach was applied where a systematic literature search and in-depth semi-structured interviews with five heads of neonatology departments and one clinical ethicist from the Austrian context were integrated into a literature review. The aim was to identify decision practice models and the choice context specific to Austria. Result(s): Professional biases, parental understanding, and the process of information giving were identified as aspects possibly influencing survival and NDI outcomes. Institutions create self-fulfilling prophecies by recommending intensive/palliative care based upon their institutional statistics, yet those vary considerably among high-income countries. Labelling an extremely preterm (EP) infant by the gestational week was shown to skew the estimates for survival while the process of information giving was shown to be subject to framing effect and other cognitive biases. Conclusion(s): Communication strategies of choice options to parents may have an impact on the way parents decide and hence also on the outcomes of EP infants. Copyright � 2019 The Author(s).
Identifier
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<a href="http://doi.org/10.1186/s12887-019-1569-5" target="_blank" rel="noreferrer noopener">10.1186/s12887-019-1569-5</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
August 2019 List
Austria
Bmc Pediatrics
Choice context
Communication strategies
Controlled Study
Decision-making
ethicist
framing bias
Hawlik K
head
high income country
Human
Limit of viability
Neonatologist
Neonatology
nervous system malformation
Newborn
Nicu
Palliative Therapy
Pregnancy
Prematurity
Semi Structured Interview
shared decision making
Stanak M
Statistics
Systematic Review
-
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June 2019 List
Text
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June 2019 List
URL Address
<a href="https://smw.ch/fileadmin/content/supplements/SMW_Suppl_222.pdf" target="_blank" rel="noreferrer noopener">https://smw.ch/fileadmin/content/supplements/SMW_Suppl_222.pdf</a>
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Title
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A demanding act of love: Barriers and challenges in communication and decision-making for infants at the limits of viability
Publisher
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Swiss Medical Weekly
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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empathy; infant; decision making; semi structured interview; delivery room; responsibility; university hospital; parental attitude; prematurity; conference abstract; human; child; patient care; honesty
Creator
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Hendriks M J; Abraham A
Description
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Introduction: The birth of an extreme preterm infant often comes unexpectedly. Decisions, then, must often be made quickly and under circumstances that can be emotionally stressful for parents or morally burdensome for health care professionals. In the past decades, more emphasis has been placed on parental involvement in the decisionmaking, but a shared approach has remained understudied and difficult to implement in practice. Method(s): In order to explore parental attitudes and values in the end-of-life decision-making process, we conducted 13 qualitative semi-structured interviews with 20 parents. We recruited parents of extremely premature infants who were born alive and died in the delivery room or in the NICU at the University Hospital Zurich in the years 2013-2015. Result(s): Parents described factors that resulted in either a smooth or friction-laden decisional process. Some elements favored good communication between parents and the health care team, such as transparent information, empathy and honesty. Elements such as lacking of transparent information and lacking continuity of care discouraged good communication. Parents experienced the end-of-life decision-making process in divergent ways. Although most parents did consider to be involved in decision-making, they were nevertheless satisfied with the process. In contrast, few parents were involved in the decision-making. They appreciated and valued the possibility to take part in the decision, but they did not perceive the decision as an act of autonomy. Rather they felt it was part of their parental responsibility and a demanding act of love. Conclusion(s): The (non)involvement of parents in the end-of-life decision-making of their infant revealed that parental decision-making preferences are not homogenous, but highly case- and contextdependent. Health care professionals, who are closest to the parents, should aim to avoid either of these two opposites. Instead, they should enable and encourage parents' relationship with their child and create a space where parental preferences for involvement in end-of-life decisions can be assessed. Only then, it is considered a shared commitment.
2017
Abraham A
Child
conference abstract
Decision Making
Delivery Room
Empathy
Hendriks M J
Honesty
Human
Infant
June 2019 List
Parental Attitude
Patient Care
Prematurity
responsibility
Semi Structured Interview
Swiss Medical Weekly
University Hospital
-
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March 2019 List
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<a href="http://doi.org/10.1016/j.jpainsymman.2018.12.269" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1016/j.jpainsymman.2018.12.269</a>
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Access to Pediatric Palliative Care in the Neonatal Intensive Care Unit by Minorities and Rural-Dwellers in the Deep South: Patterns of Care from 2009-2017 (S816)
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Journal of Pain and Symptom Management
Date
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2019
Subject
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infant; hospice; mortality; Mississippi; Alabama; palliative therapy; major clinical study; retrospective study; Caucasian; neonatal intensive care unit; prematurity; time of death; conference abstract; medical record review; human; child; female; male; controlled study; hospitalization; resuscitation; statistics; medicaid; data analysis software; Louisiana; African American; hospitalized infant; travel
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Currie E; Wolfe J; Boss R; Ejem D; Perna S; Dionne-Odom J; Buckingham S; McKillip K; Bakitas M
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<a href="http://doi.org/10.1016/j.jpainsymman.2018.12.269" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2018.12.269</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).
Description
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Objectives: 1. Describe patterns of pediatric palliative care and care disparities in neonatal intensive care unit (NICU) patients and families hospitalized in the Deep South (Alabama, Louisiana, and Mississippi). 2. Describe implications for practice related to current trends of pediatric palliative care use in the NICU and implications for future research. Original Research Background: Pediatric mortality is the highest in the first year of life. In 2013, 23,446 infants died in the U.S. Access to timely pediatric palliative care (PPC) services are limited for seriously ill infants and their families in the U. S. Deep South. Patterns of PPC in the neonatal intensive care unit (NICU) and the extent of PPC disparities in the Deep South are unknown. Research Objectives: Examine racial and geographical differences in pediatric palliative care (PPC) consultation for seriously ill infants in the neonatal intensive care unit.
2019
African American
Alabama
Bakitas M
Boss R
Buckingham S
Caucasian
Child
conference abstract
Controlled Study
Currie E
Data Analysis Software
Dionne-Odom J
Ejem D
Female
Hospice
Hospitalization
hospitalized infant
Human
Infant
Journal of Pain and Symptom Management
Louisiana
Major Clinical Study
Male
March 2019 List
McKillip K
Medicaid
Medical Record Review
Mississippi
Mortality
Neonatal Intensive Care Unit
Palliative Therapy
Perna S
Prematurity
Resuscitation
Retrospective Study
Statistics
time of death
travel
Wolfe J
-
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September 2018 List
Text
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October 2018 List
URL Address
<a href="http://doi.org/10.1186/s12887-018-1040-z" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12887-018-1040-z</a>
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Title
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Decision-making at the limit of viability: Differing perceptions and opinions between neonatal physicians and nurses
Publisher
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BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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infant mortality; medical decision making; nurse attitude; physician attitude; adult; article; assisted ventilation; controlled study; enteric feeding; female; hospital policy; human; legal aspect; male; medical practice; neonatal intensive care unit; neonatal nurse; neonatologist; patient participation; prematurity; questionnaire; religion; Switzerland; terminal care; work experience
Creator
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Bucher HU; Klein SD; Hendriks MJ; Baumann-Holzle R; Berger TM; Streuli JC; Fauchere JC; Philipp M; Roland N; Renate I; Mathias N; Liliane S; Brigitte S; Kai R; Riccardo P; Matthias R; Magali C; Ulrike S; Gudrun J; Ruth D; Jean-Claude F; Barbara D
Description
An account of the resource
Background: In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits of viability. Shared decision-making regarding these fragile infants between health care professionals and parents has become the preferred model today. However, there is an ongoing ethical debate on how decisions regarding life-sustaining treatment should be reached and who should have the final word when health care professionals and parents do not agree. We designed a survey among neonatologists and neonatal nurses to analyze practices, difficulties and parental involvement in end-of-life decisions for extremely preterm infants. Methods: All 552 physicians and nurses with at least 12 months work experience in level III neonatal intensive care units (NICU) in Switzerland were invited to participate in an online survey with 50 questions. Differences between neonatologists and NICU nurses and between language regions were explored. Results: Ninety six of 121 (79%) physicians and 302 of 431(70%) nurses completed the online questionnaire. The following difficulties with end-of-life decision-making were reported more frequently by nurses than physicians: insufficient time for decision-making, legal constraints and lack of consistent unit policies. Nurses also mentioned a lack of solidarity in our society and shortage of services for disabled more often than physicians. In the context of limiting intensive care in selected circumstances, nurses considered withholding tube feedings and respiratory support less acceptable than physicians. Nurses were more reluctant to give parents full authority to decide on the course of action for their infant. In contrast to professional category (nurse or physician), language region, professional experience and religion had little influence if any on the answers given. Conclusions: Physicians and nurses differ in many aspects of how and by whom end-of-life decisions should be made in extremely preterm infants. The divergencies between nurses and physicians may be due to differences in ethics education, varying focus in patient care and direct exposure to the patients. Acknowledging these differences is important to avoid potential conflicts within the neonatal team but also with parents in the process of end-of-life decision-making in preterm infants born at the limits of viability.Copyright © 2018 The Author(s).
Identifier
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<a href="http://doi.org/10.1186/s12887-018-1040-z" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1040-z</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.
2018
Adult
Article
assisted ventilation
Barbara D
Baumann-Hölzle R
Berger TM
Bmc Pediatrics
Brigitte S
Bucher HU
Controlled Study
enteric feeding
Fauchère JC
Female
Gudrun J
Hendriks MJ
hospital policy
Human
Infant Mortality
Jean-Claude F
Kai R
Klein SD
Legal Aspect
Liliane S
Magali C
Male
Mathias N
Matthias R
Medical Decision Making
Medical Practice
Neonatal Intensive Care Unit
Neonatal Nurse
Neonatologist
nurse attitude
October 2018 List
Patient Participation
Philipp M
Physician Attitude
Prematurity
Questionnaire
Religion
Renate I
Riccardo P
Roland N
Ruth D
September 2018 List
Streuli JC
Switzerland
Terminal Care
Ulrike S
work experience
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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October 2018 List
Text
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September 2018 List
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<a href="http://doi.org/10.1186/s12887-018-1168-x" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1186/s12887-018-1168-x</a>
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Title
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End-of-life decisions and practices for very preterm infants in the Wallonia-Brussels Federation of Belgium
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BMC Pediatrics
Date
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2018
Subject
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Brussels Capital Region; prematurity; Wallonia; article; clinical practice; female; gestational age; human; infant; major clinical study; male; neonatologist; neonatology; newborn; palliative therapy; perinatal period; qualitative research; questionnaire; terminal care; uncertainty
Creator
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Aujoulat I; Henrard S; Charon A; Johansson AB; Langhendries JP; Mostaert A; Vermeylen D; Verellen G; Maton P; Van Overmeire B; Kalenga M; Broux I; Henrion E; Dussart A; Muller MF; Cavatorta E; Marechal Y; Vanden ES; Lecart C; Haumont D; Van Herreweghe I; Vlieghe V; Debauche C; Flausch M; Sepulchre B
Description
An account of the resource
Background: Very preterm birth (24 to < 32 week's gestation) is a major public health issue due to its prevalence, the clinical and ethical questions it raises and the associated costs. It raises two major clinical and ethical dilemma: (i) during the perinatal period, whether or not to actively manage a baby born very prematurely and (ii) during the postnatal period, whether or not to continue a curative treatment plan initiated at birth. The Wallonia-Brussels Federation in Belgium counts 11 neonatal intensive care units. Methods: An inventory of key practices was compiled on the basis of an online questionnaire that was sent to the 65 neonatologists working in these units. The questionnaire investigated care-related decisions and practices during the antenatal, perinatal and postnatal periods, as well as personal opinions on the possibility of standardising and/or legislating for end-of-life decisions and practices. The participation rate was 89% (n = 58). Results: The results show a high level of homogeneity pointing to overall agreement on the main principles governing curative practice and the gestational age that can be actively managed given the current state of knowledge. There was, however, greater diversity regarding principles governing the transition to end-of-life care, as well as opinions about the need for a common protocol or law to govern such practices. Conclusion: Our results reflect the uncertainty inherent in the complex and diverse situations that are encountered in this extreme area of clinical practice, and call for qualitative research and expert debates to further document and make recommendations for best practices regarding several "gray zones" of end-of-life care in neonatology, so that high quality palliative care may be granted to all neonates concerned with end-of-life decisions.Copyright © 2018 The Author(s).
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<a href="http://doi.org/10.1186/s12887-018-1168-x" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1168-x</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
Article
Aujoulat I
Bmc Pediatrics
Broux I
Brussels Capital Region
Cavatorta E
Charon A
Clinical Practice
Debauche C
Dussart A
Female
Flausch M
Gestational Age
Haumont D
Henrard S
Henrion E
Human
Infant
Johansson AB
Kalenga M
Langhendries JP
Lecart C
Major Clinical Study
Male
Marechal Y
Maton P
Mostaert A
Muller MF
Neonatologist
Neonatology
Newborn
Palliative Therapy
perinatal period
Prematurity
Qualitative Research
Questionnaire
September 2018 List
Sepulchre B
Terminal Care
Uncertainty
Van Herreweghe I
Van Overmeire B
Vanden ES
Verellen G
Vermeylen D
Vlieghe V
Wallonia
-
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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April 2018 List
Text
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April 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2017.12.050" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpeds.2017.12.050</a>
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Title
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Worth a Try? Describing the Experiences of Families during the Course of Care in the Neonatal Intensive Care Unit When the Prognosis is Poor
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
2018
Subject
The topic of the resource
prognosis; Infant; Intensive Care Units; Medical Futility; Neonatal; Newborn; Parents; Prognosis; ethics; moral distress; prematurity; gray zone; Nicu; parent experiences; poor prognosis
Creator
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Arnolds M; Xu L; Hughes P; McCoy J; Meadow W
Description
An account of the resource
OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible neonates at 2 institutions underwent audiotaped, semistructured interviews while their infants were still in the hospital and then again 6 months to 1 year after discharge or death. Interviews were transcribed and data were analyzed using thematic analysis. Two authors independently reviewed and coded each interview and discrepancies were resolved by consensus. RESULTS: Twenty-six families were interviewed in the initial group and 17 families were interviewed in the follow-up group. The most common themes identified included realism about death (24 families), appreciation for the infant's care team (23 families), and optimism and hope (22 families). Overall themes were very similar across both centers, and among parents of infants who died and those who survived. Themes of regret, futility, distrust of care team, and infant pain were brought up infrequently or not at all. CONCLUSIONS: No family believed that the care being provided to their infant was futile; rather, parents were grateful for the care provided to their infant, regardless of outcome. Even in the case of a poor prognosis or the death of an infant, families in our study viewed their infant's stay in the neonatal intensive care unit favorably.
Identifier
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<a href="http://doi.org/10.1016/j.jpeds.2017.12.050" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2017.12.050</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
April 2018 List
Arnolds M
Ethics
gray zone
Hughes P
Infant
Intensive Care Units
Journal of Pediatrics
McCoy J
Meadow W
Medical Futility
Moral Distress
Neonatal
Newborn
Nicu
Parent Experiences
Parents
poor prognosis
Prematurity
Prognosis
Xu L
-
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Title
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March 2018 List
Text
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March 2018 List
URL Address
<a href="http://doi.org/10.1016/j.medpal.2017.08.008" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.medpal.2017.08.008</a>
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Title
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Palliative care in neonatology: French neonatologists' practice
Publisher
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Medecine Palliative
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
cohort; ethics; neonatal-period; Neonatology; Palliative Care; prematurity
Creator
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Martini P; Alluin R; Vieux R
Description
An account of the resource
Background. - Though ethical dilemma is common in neonatal practice, it is only recently subject to scientific research. Objectives. - We aimed to describe neonatologists' practices in end of life decision-making processes and in palliative care, and their practical implementation in NICU. Methods. - This cross-sectional prospective study was performed by an online survey. Pediatricians from French level III maternity wards were selected. Data collected concerned the general characteristics of the participants as well as their personal awareness of palliative reflection. Five clinical cases explored processes of discussion and decision in palliative care, as well as their implementation. Results. - Seventy-one practitioners responded on 65 level III NICUs. Ten percent were trained in palliative medicine and 17% had this project. The palliative care team was invited in less than a third of the multidisciplinary meetings, although most responders acknowledged its usefulness in accompanying children, their families or caregivers. Parents' weight in the final decision was important for the responders but less than that of doctors. It concerned parents' vision on disability. For palliative care in the delivery room, 13% did not use any medication. Others mostly used the umbilical vein. Midwives more often took responsibility of palliative care in the delivery rooms. Conclusions. - Neonatologists expert in palliative care are still too few in level III centers. Palliative teams are not yet involved in patient's regular care. Practices in palliative care in France are still quite dependent on the center, especially regarding medications. This study underlines the importance of interventions training neonatologists in the field of palliative medicine. (c) 2017 Elsevier Masson SAS. All rights reserved.
2017-12
Identifier
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<a href="http://doi.org/10.1016/j.medpal.2017.08.008" target="_blank" rel="noreferrer">10.1016/j.medpal.2017.08.008</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).
2017
Alluin R
cohort
Ethics
March 2018 List
Martini P
Medecine Palliative
neonatal-period
Neonatology
Palliative Care
Prematurity
Vieux R
-
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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March 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1542/peds.2012-0981" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2012-0981</a>
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Title
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Neonatal end-of-life care: A single-center NICU experience in Israel over a decade
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
newborn care; newborn mortality; adrenal insufficiency/ep [Epidemiology]; anemia/ep [Epidemiology]; Article; brain edema/ep [Epidemiology]; brain hemorrhage/ep [Epidemiology]; cause of death; child parent relation; congenital malformation/ep [Epidemiology]; gestational age; Human; Incidence; Israel; Jerusalem; kidney failure/ep [Epidemiology]; Medical Decision Making; Middle East; necrotizing enterocolitis/ep [Epidemiology]; Newborn; newborn death; newborn hypoxia/ep [Epidemiology]; Newborn Intensive Care; newborn sepsis/ep [Epidemiology]; practice guideline; prematurity; priority journal; quality of life; Religion; respiratory failure/ep [Epidemiology]; sepsis/ep [Epidemiology]; shock/ep [Epidemiology]; treatment duration
Creator
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Eventov-Friedman S; Kanevsky H; Bar-Oz B
Description
An account of the resource
OBJECTIVES: To follow changes in the causes of neonatal deaths in the NICU at Hadassah Medical Center, Jerusalem, Israel, over a decade; to examine trends regarding types of end-of-life-care provided (primary nonintervention, maximal intensive, and redirection of intensive care, including limitation of care and withdrawal of life-sustaining treatment); and to assess the parental role in the decision-making process given that the majority of the population is religious. METHODS: All neonates who died between 2000 and 2009 were identified. The causes and circumstances of death were Abstract: ed from the medical records. Trends in end-of-life decisions were compared between 2 time periods: 2000-2004 versus 2005-2009. RESULTS: Overall, 239 neonates died. The leading cause of death in both study periods was prematurity and its complications (76%). Among term infants, the leading cause of death was congenital anomalies (48%). Fifty-six percent of the infants received maximal intensive care; 28% had redirection of intensive care, of whom 10% had withdrawal of life-sustaining treatment; and 16% had primary nonintervention care. Over the years, maximal intensive care decreased from 65% to 46% (P < .02), whereas redirection of care increased from 19.2% to 37.5% (P < .0005). An active parental role in the end-of-life decision process increased from 38% to 84%. CONCLUSIONS: Even among religious families of extremely sick neonates, redirection of care is a feasible treatment option, suggesting that apart from survival, quality-of-life considerations emerge as an important factor in the decision-making process for the infant, parents, and caregivers.
2013-06
Identifier
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<a href="http://doi.org/10.1542/peds.2012-0981" target="_blank" rel="noreferrer">10.1542/peds.2012-0981</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).
2013
adrenal insufficiency/ep [Epidemiology]
anemia/ep [Epidemiology]
Article
Bar-Oz B
brain edema/ep [Epidemiology]
brain hemorrhage/ep [Epidemiology]
Cause Of Death
Child Parent Relation
congenital malformation/ep [Epidemiology]
Eventov-Friedman S
Gestational Age
Human
Incidence
Israel
Jerusalem
Kanevsky H
kidney failure/ep [Epidemiology]
March 2018 List
Medical Decision Making
Middle East
necrotizing enterocolitis/ep [Epidemiology]
Newborn
Newborn Care
Newborn Death
newborn hypoxia/ep [Epidemiology]
Newborn Intensive Care
newborn mortality
newborn sepsis/ep [Epidemiology]
Pediatrics
Practice Guideline
Prematurity
Priority Journal
Quality Of Life
Religion
respiratory failure/ep [Epidemiology]
sepsis/ep [Epidemiology]
shock/ep [Epidemiology]
treatment duration
-
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 2018 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 2018 List
URL Address
<a href="http://doi.org/10.7748/ncyp.28.7.51.s26" target="_blank" rel="noreferrer">http://doi.org/10.7748/ncyp.28.7.51.s26</a>
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Title
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Legal and ethical issues in neonatal nursing
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Nursing Children And Young People
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
gestational age; newborn nursing; Human; Male; Neonatal Intensive Care Unit; neonatal nurse; Newborn; prematurity; Prognosis
Creator
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Anonymous
Description
An account of the resource
Neonatal nurses regularly face complex legal and ethical dilemmas. This article discusses the hypothetical case of Jack, a two-day-old infant, born at 39 weeks' gestation, and diagnosed with trisomy 13 (syndrome), a life-limiting condition and being cared for in a neonatal intensive care unit. Jack's prognosis is poor and he is not expected to live past two weeks of age.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.7748/ncyp.28.7.51.s26" target="_blank" rel="noreferrer">10.7748/ncyp.28.7.51.s26</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).
2016
Anonymous
Gestational Age
Human
January 2018 List
Male
Neonatal Intensive Care Unit
Neonatal Nurse
Newborn
newborn nursing
Nursing Children and Young People
Prematurity
Prognosis
-
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 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
End-of-life Decisions For Extremely Preterm Infants - A Matter Of Language, Gender And Education?
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Education; Ethical Decision Making; Gender; Language; Prematurity; Prematurity/dm [disease Management]; Terminal Care; Artificial Ventilation; Editorial; Education; Female; France; Gender; Germany; Human; Human Experiment; Infant; Italy; Language; Male; Physician Attitude; Priority Journal; Quality Of Life; Shared Decision-making; Switzerland
Creator
An entity primarily responsible for making the resource
Buhrer C
Identifier
An unambiguous reference to the resource within a given context
10.1111/apa.13717
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Acta Paediatrica
April 2017 List
Artificial Ventilation
Bührer C
Editorial
Education
Ethical Decision Making
Female
France
Gender
Germany
Human
Human Experiment
Infant
Italy
Language
Male
Physician Attitude
Prematurity
Prematurity/dm [disease Management]
Priority Journal
Quality Of Life
Shared Decision-making
Switzerland
Terminal Care
-
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 2017 List
Notes
<p>Using Smart Source Parsing<br />( (pp Date of Publication: April-June 2017</p>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Analysis Of Death And Palliative Care In A Neonatal Intensive Care Unit
Publisher
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Revista Paulista De Pediatria
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Neonatal Intensive Care Unit; Newborn Death; Palliative Therapy; Analgesia; Analgesic Agent; Article; Clinical Article; Descriptive Research; Female; Follow Up; Hospitalization; Human; Male; Newborn; Pain Assessment; Prematurity; Resuscitation; Retrospective Study; Sedation; Sedative Agent
Creator
An entity primarily responsible for making the resource
Marcola L; De Barbosa S M M; Zoboli I; Polastrini R T V; Ceccon M E J
Description
An account of the resource
Objective: To characterize cases of children admitted to the Neonatal Intensive Care Unit of a tertiary university hospital who died in the period ranging from January 01, 2012 to July 31, 2014, and who required palliative care and/or were subjected to it. Methods: A retrospective descriptive study was carried out by reviewing the medical records of these patients to collect data and to perform descriptive statistical analysis. Results: During the study period, 49 children died after at least 48 hours from the time of admission. Of those, 18% children were extremely premature infants and 77% children had malformations. Although necessary for all of the patients in this study, palliative care was provided for only 20% of patients who died. Among the 12 babies who were not resuscitated, 33% of babies were not in palliative care. The Pain and Palliative Care Unit of the institution followed only four neonates in palliative care. These patients were using many invasive devices, had high therapeutic investment, and also altered pain scale scores. Conclusions: This study exhibited a large proportion of newborn infants with serious diseases and health conditions. In a few cases the patients received palliative care, but most of them were not even discussed under palliative point of view. We hope that this study will call attention to the need to propose protocols and implement training for the best treatment of these children.
Identifier
An unambiguous reference to the resource within a given context
10.1590/1984-0462/;2017;35;2;00012
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Analgesia
Analgesic Agent
Article
Ceccon M E J
Clinical Article
De Barbosa S M M
Descriptive Research
Female
Follow Up
Hospitalization
Human
Male
Marcola L
Neonatal Intensive Care Unit
Newborn
Newborn Death
October 2017 List
Pain Assessment
Palliative Therapy
Polastrini R T V
Prematurity
Resuscitation
Retrospective Study
Revista Paulista de Pediatria
Sedation
Sedative Agent
Zoboli I