1
40
14
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Title
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February 2022 List
Text
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February 2022 List
URL Address
<a href="http://doi.org/10.1055/a-1712-5313" target="_blank" rel="noreferrer noopener">http://doi.org/10.1055/a-1712-5313</a>
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Title
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Trends in length of stay for Neonatal Intensive Care Unit patients who die before hospital discharge
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American Journal of Perinatology
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2021
Subject
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death; ethics; neonate; NICU; palliative care
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Guttmann K; Puoplo N; Richter F; Weintraub AS
Description
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OBJECTIVES: The objectives of this study were to establish days between birth and death for neonates over a 14-year period, determine if days between birth and death have changed over time across gestational age cohorts, and identify diagnoses which may put infants at high risk of prolonged hospitalization leading to death. STUDY DESIGN: This was a single-site, retrospective chart review of inborn infants who died prior to hospital discharge. RESULTS: Two hundred and thirty-nine patients born between 1/1/2006 and 12/31/2020 met inclusion criteria. Days until death ranged from 0 to 300 with a median of 6 days (interquartile range = 23). Median days until death increased over time, with a statistically significant increase between epoch 1 and epoch 2 (p = 0.016) but not between epoch 2 and epoch 3 (p = 0.618). Extremely premature infants died earlier than more mature infants (p < 0.001). In addition, infants with complex congenital heart disease or a gastrointestinal (GI) catastrophe died later (p < 0.001 and p < 0.001, respectively) than newborns without cardiac or GI issues. CONCLUSIONS: Our findings demonstrate an increase in time to death for newborns who did not survive to hospital discharge over a 14-year period. This trend suggests that the dynamics informing Meadows' assertion that "doomed infants die early" may be shifting, with some seriously ill infants who die before hospital discharge surviving longer than previously described. More research is needed to understand how best to care for babies who will not survive to discharge and to explore when supports such as palliative care consultation may be beneficial. KEY POINTS: As per W. Meadow, "Doomed infants die early" · Pre-death length of stay varies with diagnosis.. · Some seriously ill infants who die before hospital discharge are no longer dying early.. · These infants and families may need supports..
Identifier
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<a href="http://doi.org/10.1055/a-1712-5313" target="_blank" rel="noreferrer noopener">10.1055/a-1712-5313</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
American Journal of Perinatology
Death
Ethics
February 2022 List
Guttmann K
Neonate
Nicu
Palliative Care
Puoplo N
Richter F
Weintraub AS
-
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Title
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December 2021 List
Text
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December 2021 List
URL Address
<a href="http://doi.org/10.1177/08830738211045238" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/08830738211045238</a>
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Title
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Neuropalliative Care for Neonates
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Journal of Child Neurology
Date
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2021
Subject
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infant; neonate; neuropalliative care; pediatric; preterm; quality of life
Creator
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Rent SM; Bidegain M; Bost MH; Hornik C; Lemmon ME
Description
An account of the resource
Many childhood neurologic conditions are first diagnosed in the perinatal period and shorten or seriously alter the lives of affected infants. Neonatal neuropalliative care incorporates core practices and teachings of both neurology and palliative care and is directed toward patients and families affected by serious neurologic conditions in the antenatal and immediate newborn period. This review outlines key considerations for neurologists hoping to provide a neuropalliative care approach antenatally, in the neonatal intensive care unit, and around hospital discharge. We explore 4 core domains of neuropalliative care: (1) family-centered communication, (2) prognostication, (3) decision making, and (4) pain and symptom management. We address special considerations in care at the end of life and in varied cultural and practice contexts.
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<a href="http://doi.org/10.1177/08830738211045238" target="_blank" rel="noreferrer noopener">10.1177/08830738211045238</a>
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2021
Bidegain M
Bost MH
December 2021 List
Hornik C
Infant
Journal of Child Neurology
Lemmon ME
Neonate
neuropalliative care
Pediatric
preterm
Quality Of Life
Rent SM
-
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Title
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November 2021 List
Text
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November 2021 List
URL Address
<a href="http://doi.org/10.1186/s12904-021-00831-1" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-021-00831-1</a>
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Parental bereavement - impact of death of neonates and children under 12 years on personhood of parents: a systematic scoping review
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BMC Palliative Care
Date
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2021
Subject
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Infant; Bereavement; Parents; End of life; Personhood; Paediatrics; Palliative care; Death; Neonate; Ring theory of personhood
Creator
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Vig PS; Lim JY; Lee RWL; Huang H; Tan XH; Lim WQ; Lim MBXY; Lee ASI; Chiam M; Lim C; Baral VR; Krishna LKR
Description
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BACKGROUND: Losing a child tragically impacts the well-being and functioning of parents. With these effects extending beyond emotional, physical morbidity and compromising self-perceptions, appropriate, longitudinal, timely and personalised support is key to effective care of bereaved parents. However, in the absence of a comprehensive understanding of parental bereavement, effective support of bereaved parents remains suboptimal. To address this gap, we scrutinise prevailing data on the effects of a child's death, aged 0-12 years, through the lens of the Ring Theory of Personhood (RToP). METHODS: To study prevailing accounts of bereaved parents following the death of a child, we adopt Krishna's Systematic Evidence Based Approach (SEBA) to structure our Systematic Scoping Review (SSR in SEBA). RESULTS: Three thousand seventy-four abstracts were reviewed, 160 full text articles were evaluated, and 111 articles were included and analysed using thematic and content analysis. Four themes/categories were identified relating to the four rings of the RToP. Findings reveal that static concepts of protective and risk factors for grief are misplaced and that the support of healthcare professionals is key to assisting bereaved parents. CONCLUSION: In the absence of consistent support of bereaved parents, this study highlights the need for effective training of healthcare professionals, beginning with an appreciation that every aspect of an individual parent's personhood is impacted by the loss of their child. Acknowledging grief as a complex, evolving and personalised process subjected to parental characteristics, settings, context and available support, this SSR in SEBA calls attention to effective nurturing of the relationship between parents and healthcare professionals, and suggests use of the RToP to assess and direct personalised, timely, specific support of parents in evolving conditions. We believe the findings of this review also call for further studies to support healthcare professionals as they journey with bereaved parents.
Identifier
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<a href="http://doi.org/10.1186/s12904-021-00831-1" target="_blank" rel="noreferrer noopener">10.1186/s12904-021-00831-1</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
Baral VR
Bereavement
BMC Palliative Care
Chiam M
Death
End Of Life
Huang H
Infant
Krishna LKR
Lee ASI
Lee RWL
Lim C
Lim JY
Lim MBXY
Lim WQ
Neonate
November 2021 List
Paediatrics
Palliative Care
Parents
Personhood
Ring theory of personhood
Tan XH
Vig PS
-
Dublin Core
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Title
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April 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2021 List
URL Address
<a href="http://doi.org/10.1186/s12890-020-1144-8" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12890-020-1144-8</a>
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Complications and mortality of venovenous extracorporeal membrane oxygenation in the treatment of neonatal respiratory failure: a systematic review and meta-analysis
Publisher
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BMC Pulmonary Medicine
Date
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2020
Subject
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Humans; Infant Newborn; Survival Rate; Pneumothorax/etiology; Systematic reviews; Meta-analysis; Neonate; Extracorporeal membrane oxygenation; Extracorporeal Membrane Oxygenation/adverse effects/mortality; Hypertension/etiology; Observational Studies as Topic; Respiratory Distress Syndrome Newborn/mortality/therapy; Respiratory failure
Creator
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Xiong J; Zhang L; Bao L
Description
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BACKGROUND: Extracorporeal membrane oxygenation (ECMO) has been increasingly used for severe neonatal respiratory failure refractory to conventional treatments. To systematically evaluate the complications and mortality of venovenous ECMO (VV ECMO) in the treatment of neonatal respiratory failure, we performed a systematic review and meta-analysis of all the related studies. METHODS: PubMed, Embase, and Cochrane Library were searched. The retrieval period was from the establishment of the database to February 2019. Two investigators independently screened articles according to the inclusion and exclusion criteria. The quality of article was assessed by the Newcastle-Ottawa scale (NOS). The meta-analysis was performed by Stata 15.0 software. RESULTS: Four observational studies were included, with a total of 347 newborns. VV ECMO was used for neonates with refractory respiratory failure unresponsive to maximal medical therapy. Median ages of the newborns at cannulation were 43.2 h, 23 h, 19 h, and 71 h in the included four studies, respectively. The overall mortality at hospital charge was 12% (5-18%) with a heterogeneity of I(2) = 73.8% (p = 0.01). Two studies reported mortality during ECMO and after decannulation, with 10% (0.8-19.2%) and 6.1% (2.6-9.6%), respectively. The most common complications associated with VV ECMO were: pneumothorax (20.6%), hypertension (20.4%), cannula dysfunction (20.2%), seizure (14.9%), renal failure requiring hemofiltration (14.7%), infectious complications (10.3%), thrombi (7.4%), intracranial hemorrhage or infarction (6.6%), hemolysis (5.3%), cannula site bleeding (4.4%), gastrointestinal bleeding (3.7%), oxygenator failure (2.8%), other bleeding events (2.8%), brain death (1.9%), and myocardial stun (0.9%). CONCLUSION: The overall mortality at discharge of VV ECMO in the treatment of neonatal respiratory failure was 12%. Although complications are frequent, the survival rate during hospitalization is still high. Further larger samples, and higher quality of randomized controlled trials (RCTs) are needed to clarify the efficacy and safety of this technique in the treatment of neonatal respiratory failure.
Identifier
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<a href="http://doi.org/10.1186/s12890-020-1144-8" target="_blank" rel="noreferrer noopener">10.1186/s12890-020-1144-8</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
April 2021 List
Bao L
BMC Pulmonary Medicine
Extracorporeal Membrane Oxygenation
Extracorporeal Membrane Oxygenation/adverse effects/mortality
Humans
Hypertension/etiology
Infant Newborn
Meta-Analysis
Neonate
Observational Studies as Topic
Pneumothorax/etiology
Respiratory Distress Syndrome Newborn/mortality/therapy
respiratory failure
Survival Rate
Systematic reviews
Xiong J
Zhang L
-
Dublin Core
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Title
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Special Edition #2 2022 List
Text
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Special Edition #2
URL Address
<a href="http://doi.org/10.1016/j.pec.2021.06.013" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pec.2021.06.013</a>
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Title
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Assessment of Parent Understanding in Conferences for Critically Ill Neonates
Publisher
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Patient Education and Counseling
Date
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2021
Subject
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Critically ill infant; parent understanding; Clinician-patient communication; Neonate
Creator
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Barks MC; Schindler EA; Ubel PA; Jiao MG; Pollak KI; Huffstetler HE; Lemmon ME
Description
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Objectives This study aimed to characterize the use and impact of assessments of understanding in parent-clinician communication for critically ill infants. Methods We enrolled parents and clinicians participating in family conferences for infants with neurologic conditions. Family conferences were audio recorded as they occurred. We used a directed content analysis approach to identify clinician assessments of understanding and parent responses to those assessments. Assessments were classified based on an adapted framework; responses were characterized as “absent,” “yes/no,” or “elaborated.” Results Fifty conferences involving the care of 25 infants were analyzed; these contained 374 distinct assessments of understanding. Most (n = 209/374, 56%) assessments were partial (i.e. okay?); a minority (n = 60/374, 16%) were open-ended. When clinicians asked open-ended questions, parents elaborated in their answers most of the time (n = 55/60, 92%). Approximately three-quarter of partial assessments yielded no verbal response from parents. No conferences included a teach-back. Conclusions Although common, most clinician assessments of understanding were partial or close-ended and rarely resulted in elaborated responses from parents. Open-ended assessments are an effective, underutilized strategy to increase parent engagement and clinician awareness of information needs. Practice implications Clinicians hoping to facilitate parent engagement and question-asking should rely on open-ended statements to assess understanding.
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<a href="http://doi.org/10.1016/j.pec.2021.06.013" target="_blank" rel="noreferrer noopener">10.1016/j.pec.2021.06.013</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
2022 Special Edition 2 - Parent Perspectives
Barks MC
Clinician-patient communication
Critically ill infant
Huffstetler HE
Jiao MG
Lemmon ME
Neonate
parent understanding
Patient Education and Counseling
Pollak KI
Schindler EA
Ubel PA
-
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/10.1055/a-1179-0530" target="_blank" rel="noreferrer noopener">http://doi.org/10.1055/a-1179-0530</a>
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Title
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Extending the Concept of Advance Care Planning to the Perinatal Period
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Klinische Padiatrie
Date
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2020
Subject
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palliative care; pregnancy; life-limiting disease; neonate; birth plan; prenatal counselling
Creator
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Garten L; von der Hude K; Strahleck T; Krones T
Description
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Easier access to prenatal diagnostic procedures led to its widespread use as a screening measure. Hence, today it is more common for life-limiting illnesses to be diagnosed during fetal life. The concept of Advance Care Planning (ACP) provides a framework for caregivers, families and their multidisciplinary teams to anticipate and plan ahead for potential future medical decisions so that the affected children are reliably treated according to their parents' individual values and wishes. In the perinatal context, ACP also has the potential to tackle the needs of unborn or newborn children with life-limiting illnesses and their families better, avoid unnecessary and burdensome measures and focus upon goals that are valuable and meaningful to both child and family.
Identifier
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<a href="http://doi.org/10.1055/a-1179-0530" target="_blank" rel="noreferrer noopener">10.1055/a-1179-0530</a>
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2020
August 2020 List
birth plan
Garten L
Klinische Pädiatrie
Krones T
life-limiting disease
Neonate
Palliative Care
Pregnancy
prenatal counselling
Strahleck T
von der Hude K
-
Dublin Core
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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/10.1177/08830738211056779" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/08830738211056779</a>
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Title
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Decision Making for Infants With Neurologic Conditions
Publisher
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Journal of Child Neurology
Date
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2022
Subject
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Children; Disabilities; Ethics; Infant; Neonate; Quality of life
Creator
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Gerrity C; Farley S; Barks MC; Ubel PA; Brandon D; Pollak KI; Lemmon ME
Description
An account of the resource
Parents and clinicians caring for infants with neurologic disease often make high-stakes decisions about infant care. To characterize how these decisions occur, we enrolled infants with neurologic conditions, their parents, and their clinicians in a longitudinal mixed methods study of decision making. We audio recorded family conferences as they occurred and analyzed conferences using a directed content analysis approach. We enrolled 40 infants and 61 parents who participated in 68 family conferences. Thirty-seven conferences contained a treatment decision. We identified 4 key domains of the decision-making process: medical information exchange, values-based exchange, therapeutic partnership, and integration of values into decision making. Discussion of values was typically parent initiated (n = 20, 83%); approximately one-third of conferences did not contain any discussion of parent values. Integration of family values and preferences into decision making occurred in approximately half of conferences. These findings highlight opportunities for interventions that promote values discussion and the integration of values into decision making. Copyright © The Author(s) 2022.
Identifier
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<a href="http://doi.org/10.1177/08830738211056779" target="_blank" rel="noreferrer noopener">10.1177/08830738211056779</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
Barks MC
Brandon D
Children
Disabilities
Ethics
Farley S
Gerrity C
Infant
Journal of Child Neurology
Lemmon ME
Neonate
Pollak KI
Quality Of Life
Ubel PA
-
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
August 2018 List
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).
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 2018 List
URL Address
<a href="http://doi.org/10.22038/ijp.2018.28630.2511" target="_blank" rel="noreferrer noopener">http://doi.org/10.22038/ijp.2018.28630.2511</a>
Dublin Core
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Title
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Spiritual Challenges Experienced by Nurses in Neonatal End of Life: A Qualitative Study
Publisher
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International Journal of Pediatrics-Mashhad
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Nurse; palliative care; Pediatrics; Qualitative Research; Death; NICU; barriers; infant; families; birth; intensive-care-unit; interventions; iran; of-life; Neonate
Creator
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Ghaljaei F; Goli H; Rezaie N; Sadeghi N
Description
An account of the resource
Background The literature reviews show that taking care of dying newborns for a nurse is associated with stress and anxiety, and nurses will be faced with many challenges, the present study aimed to explain the spiritual challenges experienced by nurses in neonatal end of life in the NICU. The present study was conducted with a qualitative method and "purposive" sampling. The study environment was NICU in the hospitals of Zahedan, Iran. Semi-structured interviews used for interview and data collection. A number of 24 participants with inclusion criteria were interviewed. Qualitative content analysis method was used with the conventional approach and inductive method with Graneheim and Lundman approach. Data analysis explored were categorized in three main themes: spiritual challenge of neonatal care with two-categories (palliative care, and care with love and affection); psychological / spiritual support challenges of family with two categories (spiritual support of family, psychological support of family), and nurses' spiritual distress with one category (nurse's trauma in neonatal care). In this study three themes were obtained: 1- Spiritual challenge of neonatal care with two-categories (palliative care, and care with love and affection); 2- Psychological / spiritual support challenges of family with two categories (spiritual support of family, psychological support of family), and 3- The nurses' spiritual distress with one category (nurse's trauma in neonatal care).
Identifier
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<a href="http://doi.org/10.22038/ijp.2018.28630.2511" target="_blank" rel="noreferrer noopener">10.22038/ijp.2018.28630.2511</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
August 2018 List
Barriers
Birth
Death
Families
Ghaljaei F
Goli H
Infant
Intensive-care-unit
International Journal of Pediatrics-Mashhad
Interventions
Iran
Neonate
Nicu
Nurse
Of-life
Palliative Care
Pediatrics
Qualitative Research
Rezaie N
Sadeghi N
-
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
February 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
February List 2023
URL Address
<a href="http://doi.org/10.1016/j.pedn.2022.11.014" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.pedn.2022.11.014</a>
Dublin Core
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Title
A name given to the resource
Care management trajectories of infants with life-limiting conditions who died before 12 months of age; a retrospective patient health record review
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
2022
Subject
The topic of the resource
End-of-life-care; Infant; Life-limiting condition; Neonate; Palliative Care
Creator
An entity primarily responsible for making the resource
Iten R; O'Connor M; Cuddeford L; Gill FJ
Description
An account of the resource
PURPOSE: To characterise the care management trajectories of infants with life-limiting conditions, who died before 12 months, including clinical decision-making processes, identification of triggers that led to changes in care management from cure-orientated to palliative care and specialist palliative care team involvement. DESIGN AND METHODS: Retrospective patient health record review of infants with life-limiting conditions who died before 12 months of age and received care at three hospitals in Western Australia. Two data analysis methods; directed content analysis and process mapping. RESULTS: A total of 45 patient health records were reviewed. Process mapping led to typology of care management encompassing four trajectories; early de-escalation due to catastrophic event; treatment with curative intent throughout; treatment with curative intent until a significant point; and early treatment limits. Standardised advance care planning processes were used for just over 10% of infants. There was specialist palliative care team involvement for 25% of infants. CONCLUSION: Only a proportion of infants received early integration of palliative care principles and practices. Infants and their families may benefit from earlier integration of palliative care, and standardised processes for advance care planning that are done in parallel to treatment. PRACTICE IMPLICATIONS: There is opportunity to further enhance the delivery of palliative care to infants with life-limiting conditions and optimise the experience for families through education for health professionals, implementation of advance care planning and standardisation through policies and clinical practice guidelines.
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<a href="http://doi.org/10.1016/j.pedn.2022.11.014" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2022.11.014</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
Cuddeford L
End-of-Life-Care
February List 2023
Gill FJ
Infant
Iten R
Journal of Pediatric Nursing
Life-limiting Condition
Neonate
O'Connor M
Palliative Care
-
Dublin Core
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Title
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December 2020 List
Text
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Citation List Month
December 2020 List
URL Address
<a href="http://doi.org/10.1016/j.pediatrneurol.2020.08.002" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pediatrneurol.2020.08.002</a>
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Title
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Characterization of Death in Infants With Neonatal Seizures
Publisher
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Pediatric Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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epilepsy; hospice; neonate; neurocritical care; neurology; palliative care; preterm
Creator
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Lemmon ME; Bonifacio SL; Shellhaas RA; Wusthoff CJ; Greenberg RG; Soul JS; Chang T; Chu CJ; Bates S; Massey SL; Abend NS; Cilio MR; Glass HC
Description
An account of the resource
Background: Neonatal seizures are associated with death and neurological morbidity; however, little is known about how neonates with seizures die. Method(s): This was a prospective, observational cohort study of neonates with seizures treated at seven sites of the Neonatal Seizure Registry. We characterized the mode of death, evaluated the association between infant characteristics and mode of death, and evaluated predictors of death or transfer to hospice. Result(s): We enrolled 611 consecutive neonates with seizures, and 90 neonates (15%) died before hospital discharge at a median age of 11 days (range: 1 to 163 days); 32 (36%) died in the first postnatal week. An additional 19 neonates (3%) were transferred to hospice. The most common mode of in-hospital death was death after extubation amidst concerns for poor neurological prognosis, in the absence of life-threatening physiologic instability (n = 43, 48%). Only one infant died while actively receiving cardiopulmonary resuscitation. In an adjusted analysis, premature birth (odds ratio: 3.06, 95% confidence interval 1.59 to 5.90) and high seizure burden (odds ratio: 4.33, 95% confidence interval 1.88 to 9.95) were associated with increased odds of death or transfer to hospice. Conclusion(s): In a cohort of neonates with seizures, death occurred predominantly after decisions to withdraw or withhold life-sustaining intervention(s). Future work should characterize how these decisions occur and develop optimized approaches to support families and clinicians caring for newborns with seizures. Copyright © 2020 Elsevier Inc.
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<a href="http://doi.org/10.1016/j.pediatrneurol.2020.08.002" target="_blank" rel="noreferrer noopener">10.1016/j.pediatrneurol.2020.08.002</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
Abend NS
Bates S
Bonifacio SL
Chang T
Chu CJ
Cilio MR
December 2020 List
Epilepsy
Glass HC
Greenberg RG
Hospice
Lemmon ME
Massey SL
Neonate
Neurocritical care
Neurology
Palliative Care
Pediatric Neurology
preterm
Shellhaas RA
Soul JS
Wusthoff CJ
-
Dublin Core
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Title
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June 2020 List
Text
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Citation List Month
June 2020 List
URL Address
<a href="http://doi.org/10.1097/ANC.0000000000000707" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/ANC.0000000000000707</a>
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Title
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Early for Everyone: Reconceptualizing Palliative Care in the Neonatal Intensive Care Unit
Publisher
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Advances in Neonatal Care
Date
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2020
Subject
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care planning; coping; neonatal intensive care; neonate; palliative care; parent; shared decision-making
Creator
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Quinn M; Weiss A B; Crist J D; Fortney C A
Description
An account of the resource
Background: Palliative care (PC) in the neonatal intensive care unit (NICU) is often provided exclusively to infants expected to die. Standards of care support providing PC early after diagnosis with any condition likely to impact quality of life.Purpose: To determine the state of early PC practice across populations to derive elements of early PC applicable to neonates and their families and demonstrate their application in practice.Search Strategy: Multiple literature searches were conducted from 2016 to 2019. Common keywords used were: palliative care; early PC; end of life, neonate; NICU; perinatal PC; pediatric PC; family-centered care; advanced care planning; palliative care consultant; and shared decision-making.Findings: Early PC is an emerging practice in adult, pediatric, and perinatal populations that has been shown to be helpful for and recommended by families. Three key elements of early PC in the NICU are shared decision-making, care planning, and coping with distress. A hypothetical case of a 24-week infant is presented to illustrate how findings may be applied. Evidence supports expansion of neonatal PC to include infants and families without terminal diagnoses and initiation earlier in care.Implications For Practice: Involving parents more fully in care planning activities and decision-making and providing structured support for them to cope with distress despite their child's prognosis are essential to early PC.Implications For Research: As early PC is incorporated into practice, strategies should be evaluated for feasibility and efficacy to improve parental and neonatal outcomes. Researchers should consider engaging NICU parent stakeholders in leading early PC program development and research.
Identifier
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<a href="http://doi.org/10.1097/ANC.0000000000000707" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000707</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
Advances in Neonatal Care
care planning
Coping
Crist J D
Fortney C A
June 2020 List
neonatal intensive care
Neonate
Palliative Care
Parent
Quinn M
Shared Decision-making
Weiss A B
-
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Title
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2022 Special Edition 4 - Low Resource Setting List
Text
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Citation List Month
2022 Special Edition Low Resource Setting Issue
URL Address
<a href="http://doi.org/10.1097/njh.0000000000000903" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/njh.0000000000000903</a>
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Title
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Neonatal Nurses' Perceptions and Needs of End-of-Life Care Practice: A Jordanian Qualitative Study
Publisher
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Journal of Hospice & Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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end-of-life care; neonate; NICU nurses; perception
Creator
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Shattnawi KK; Younis BJ; Omran SM
Description
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End-of-life (EOL) care for newborns is challenging and requires well-prepared nurses to provide the best care for the dying baby and to prepare and support parents during such a difficult experience. This study aimed to explore Jordanian neonatal intensive care unit nurses' perceptions and needs regarding the provision of EOL care. This study used an exploratory descriptive qualitative approach and was conducted among a sample of 12 Jordanian neonatal intensive care unit nurses. Semistructured interviews were conducted to allow the nurses to describe their personal experiences and express their needs related to the provision of EOL care. Two main themes and 6 subthemes emerged from the analysis process. Main themes were (1) the challenges related to the provision of EOL care, and (2) nurses' needs: what matters most. The findings of this study shed light on neonatal care unit nurses' experiences and needs related to the provision of EOL care. The results of this study may be used to develop EOL care guidelines, programs, and protocols to be applied in intensive care units.
Identifier
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<a href="http://doi.org/10.1097/njh.0000000000000903" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000903</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
2022 Special Edition Low Resource Setting Issue
End-of-life Care
Journal Of Hospice & Palliative Nursing
Neonate
NICU nurses
Omran SM
Perception
Shattnawi KK
Younis BJ
-
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 2017 List
Dublin Core
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Title
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Counseling For Personal Care Options At Neonatal End Of Life: A Quantitative And Qualitative Parent Survey Psychosocial
Publisher
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Bmc Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
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Neonate; Death; Memory Making
Creator
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Shelkowitz E; Vessella SL; O'Reilly P; Tucker R; Lechner BE
Description
An account of the resource
BackgroundThe death of a newborn is a traumatic life changing event in the lives of parents. We hypothesized that bereaved parents of newborn infants want to have choices in the personal care of their infant at the end of life.MethodsParents who had suffered a perinatal or neonatal loss between 1 and 6 years before the survey in a regional level IV neonatal intensive care unit (NICU) and associated labor and delivery room were invited to participate. Parents chose between an online survey, paper survey or telephone interview. The survey included multiple choice and open ended questions.ResultsParents prefer multiple options for the personal care of their infant at the end of life. Emergent themes were need for guidance by the medical team, memory making, feeling cared for and respected by staff, and regrets related to missed opportunities.ConclusionWhile parents differ in their preferences in utilizing specific personal care options for their infant’s end of life, they share a common preference for being presented with multiple options to choose from and in being guided and supported by healthcare providers, while being afforded the opportunity to make memories with their infant by bonding with and parenting them.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-015-0063-6) contains supplementary material, which is available to authorized users.
Identifier
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10.1186/s12904-015-0063-6
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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).
2015
BMC Palliative Care
Death
July 2017 List
Lechner BE
Memory Making
Neonate
O'Reilly P
Shelkowitz E
Tucker R
Vessella SL
-
Dublin Core
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Title
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April 2024 List
Text
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Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.7812/tpp/23.107" target="_blank" rel="noreferrer noopener"> http://doi.org/10.7812/tpp/23.107</a>
Dublin Core
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Title
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Empathic Care of Neonates: A Critical Literature Review
Publisher
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The Permanente Journal
Date
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2024
Subject
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Infant Newborn; review; patient; patient-centered care; neonate; Clinical empathy; empathic concern
Creator
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Sobrinho Valete CO; Albuquerque A; Luiz Ferreira EA
Description
An account of the resource
Clinical empathy is a multidimensional ability to feel the patient's suffering, branched into components such as cognitive, emotional, and action, which results in benefits for patients, parents, health professionals, medical students, and others. The authors performed a critical review of the literature about empathy in neonatal care, in 2 databases, and analyzed the co-occurrence of keywords in the last 10 years. Nine articles were included in the qualitative synthesis. They highlight the interconnection between empathy, communication, ethics, and palliative care. Empathy was analyzed in situations that included pain, death, and suffering in the neonate, especially related to critically ill neonates. Strategies such as self-reflection and digital storytelling may help increase the clinical empathy education of health professionals. There are gaps in research considering the measurement of clinical empathy in neonatal care, and this measurement should be encouraged. To change care practices, education on empathy for health professionals, especially physicians, should be improved.
Identifier
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<a href="http://doi.org/10.7812/tpp/23.107" target="_blank" rel="noreferrer noopener">10.7812/tpp/23.107</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
Albuquerque A
April List 2024
Clinical empathy
empathic concern
Infant Newborn
Luiz Ferreira EA
Neonate
Patient
Patient-centered Care
Review
Sobrinho Valete CO
The Permanente Journal