1
40
734
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Title
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Special Edition #1 2022 List
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Special Edition #1 2022 List
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<a href="http://doi.org/10.1097/ANC.0000000000000677" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/ANC.0000000000000677</a>
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Healthcare Satisfaction and Unmet Needs Among Bereaved Parents in the NICU
Publisher
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Advances in Neonatal Care
Date
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2020
Subject
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Neonatal intensive care; Newborn Infant; Bereavement; Delivery of Health Care; Infant; Needs Assessment; Palliative Care; Parents; Personal Satisfaction; Prospective Studies; Terminal Care
Creator
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Baughcum AE; Fortney CA; Winning AM; Dunnells ZDO; Humphrey LM; Gerhardt CA
Description
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BACKGROUND: Learning directly from bereaved parents about their experiences in the neonatal intensive care unit (NICU) can improve services at end-of-life (EOL) care. Parents who perceive that their infant suffered may report less satisfaction with care and may be at greater risk for distress after the death. Despite calls to improve EOL care for children, limited research has examined the EOL experiences of families in the NICU. PURPOSE: We examined parent perceptions of their infant's EOL experience (eg, symptom burden and suffering) and satisfaction with care in the NICU. METHODS/SEARCH STRATEGY: Forty-two mothers and 27 fathers (representing 42 infants) participated in a mixed-methods study between 3 months and 5 years after their infant's death (mean = 39.45 months, SD = 17.19). Parents reported on healthcare satisfaction, unmet needs, and infant symptoms and suffering in the final week of life. FINDINGS/RESULTS: Parents reported high levels of healthcare satisfaction, with relative strengths in providers' technical skills and inclusion of the family. Greater perceived infant suffering was associated with lower healthcare satisfaction and fewer well-met needs at EOL. Parents' understanding of their infant's condition, emotional support, communication, symptom management, and bereavement care were identified as areas for improvement. IMPLICATIONS FOR PRACTICE: Parents value comprehensive, family-centered care in the NICU. Additionally, monitoring and alleviating infant symptoms contribute to greater parental satisfaction with care. Improving staff knowledge about EOL care and developing structured bereavement follow-up programs may enhance healthcare satisfaction and family outcomes. IMPLICATIONS FOR RESEARCH: Prospective studies are needed to better understand parental perceptions of EOL care and the influence on later parental adjustment.
Identifier
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<a href="http://doi.org/10.1097/ANC.0000000000000677" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000677</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
2022 Special Edition 1 - Parent Perspectives
Advances in Neonatal Care
Baughcum AE
Bereavement
Delivery of Health Care
Dunnells ZDO
Fortney CA
Gerhardt CA
Humphrey LM
Infant
Needs Assessment
neonatal intensive care
Newborn Infant
Palliative Care
Parents
Personal Satisfaction
Prospective Studies
Terminal Care
Winning AM
-
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 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/10.1177/0269216319885566" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319885566</a>
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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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Insights into the perception that research ethics committees are a barrier to research with seriously ill children: A study of committee minutes and correspondence with researchers studying seriously ill children
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Infant; Adolescent; Child; Female; Humans; Male; Child Preschool; Infant Newborn; Research Design; Terminally Ill; Ethics Committees Research; Human Experimentation/ethics; content analysis; United Kingdom; research; ethics committees
Creator
An entity primarily responsible for making the resource
Butler AE; Vincent K; Bluebond-Langner M
Description
An account of the resource
BACKGROUND: Research ethics committees are commonly perceived as a 'barrier' to research involving seriously ill children. Researchers studying seriously ill children often feel that committees view their applications more harshly compared to applications for research with other populations. Whether or not this is the case in practice is unknown. AIM: The aim of this study was to explore committees' concerns, expectations and decisions for research applications involving seriously ill children submitted for review in the United Kingdom. DESIGN: Content analysis of committee meeting minutes, decision letters and researcher response letters. SETTING/PARTICIPANTS: Chief investigators for National Institute of Health Research portfolio studies involving seriously ill children were contacted for permission to review their study documents. RESULTS: Of the 77 applications included in this study, 57 received requests for revisions at first review. Committee expectations and concerns commonly related to participant information sheets, methodology, consent, recruitment or formatting. Changes were made to 53 of these studies, all of which were subsequently approved. CONCLUSION: Our findings suggest that committees review applications for research involving seriously ill children with the same scrutiny as applications for research with other populations. Yet, the perception that committees act as a barrier to this type of research persists. We suggest that this perception remains due to other factors including, but not limited to, the high levels of formatting or administrative revisions requested by committees or additional study requirements needed for research involving children, such as multiple versions of consent forms or participant information sheets.
Identifier
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<a href="http://doi.org/10.1177/0269216319885566" target="_blank" rel="noreferrer noopener">10.1177/0269216319885566</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adolescent
April 2021 List
Bluebond-Langner M
Butler AE
Child
Child Preschool
Content Analysis
Ethics Committees
Ethics Committees Research
Female
Human Experimentation/ethics
Humans
Infant
Infant Newborn
Male
Palliative Medicine
Research
Research Design
Terminally Ill
United Kingdom
Vincent K
-
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Title
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June 2021 List
Text
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Citation List Month
June 2021 List
URL Address
<a href="http://doi.org/10.1016/j.arcped.2021.03.004" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.arcped.2021.03.004</a>
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Title
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Withholding and withdrawing treatment in pediatric intensive care. Update of the GFRUP recommendations
Publisher
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Archives of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Infant; Child; Palliative care; Pediatric critical care; Resuscitation orders; Treatment withdrawal; Treatment withholding
Creator
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Cremer R; de Saint Blanquat L; Birsan S; Bordet F; Botte A; Brissaud O; Guilbert J; Le Roux B; Le Reun C; Michel F; Millasseau F; Sinet M; Hubert P
Description
An account of the resource
In 2005, the French-speaking task force on pediatric critical and emergency care [Groupe Francophone de Réanimation et d'Urgences Pédiatriques (GFRUP)] issued recommendations on withholding and withdrawing treatments in pediatric critical care. Since then, the French Public Health Code, modified by the laws passed in 2005 and 2016 and by their enactment decrees, has established a legal framework for practice. Now, 15 years later, an update of these recommendations was needed to factor in the experience acquired by healthcare teams, new questions raised by practice surveys, the recommendations issued in the interval, the changes in legislation, and a few legal precedents. The objective of this article is to help pediatric critical care teams find the closest possible compromise between the ethical principles guiding the care offered to the child and the family and compliance with current regulations and laws.
Identifier
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<a href="http://doi.org/10.1016/j.arcped.2021.03.004" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2021.03.004</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
Archives of Pediatrics
Birsan S
Bordet F
Botte A
Brissaud O
Child
Cremer R
de Saint Blanquat L
Guilbert J
Hubert P
Infant
June 2021 List
Le Reun C
Le Roux B
Michel F
Millasseau F
Palliative Care
Pediatric Critical Care
Resuscitation Orders
Sinet M
Treatment Withdrawal
Treatment withholding
-
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 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/10.1093/pch/pxz089" target="_blank" rel="noreferrer noopener">http://doi.org/10.1093/pch/pxz089</a>
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Experiences from the first 10 years of a perinatal palliative care program: A retrospective chart review
Publisher
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Paediatrics & Child Health
Date
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2021
Subject
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Infant; Program Evaluation; Referral and Consultation; Terminal Care; Human; Descriptive Statistics; Perinatal Care; Prenatal Diagnosis; Retrospective Design; Record Review; Work Experiences; Gestational Age; Perinatal Death; Palliative Care -- In Infancy and Childhood; Treatment Outcomes; Neonatologists; Central Nervous System Diseases; Early Intervention; Infant High Risk
Creator
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Doherty ME; Power L; Williams R; Stoppels N; Grandmaison Dumond L
Description
An account of the resource
Background Perinatal palliative care is a relatively new component of paediatric palliative care which supports families who are expecting the birth of a child with a life-limiting condition. This study seeks to understand the characteristics of the infants and families referred for perinatal palliative care and the context for referrals in terms of diagnoses, referral characteristics, interventions, and outcomes. Methods A retrospective chart review of infants with prenatally diagnosed life-limiting conditions that were referred for perinatal palliative care. Results Eighty-five referrals were made for perinatal palliative care during the 10-year period, of which, 84 chose to continue with the service. Average gestational age at diagnosis was 23 weeks, and the mean time between diagnosis and referral to palliative care was 7 weeks. Stillbirths were common, occurring in 29% cases. Of livebirths, 59% of the infants survived for 2 days, and 80% died within 30 days. The most commonly referred conditions were trisomy 13 or 18 (24%), severe central nervous system malformations (20%), and severe congenital cardiac disease (16%). Referrals were most often made by neonatologists (39%), and maternal–fetal medicine specialists (36%). Discussion Our study confirms previously observed characteristics of diagnosis, referrals, and outcomes, while providing the most detailed account of lifespans for particular diagnoses to date. Our findings validate the need for perinatal palliative care, as 99% of those referred continued with the service. Future research should adopt a prospective approach to identify critical factors affecting decision making of families and physicians in the wake of a life-limiting diagnosis.
Identifier
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<a href="http://doi.org/10.1093/pch/pxz089" target="_blank" rel="noreferrer noopener">10.1093/pch/pxz089</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
April 2021 List
Central Nervous System Diseases
Descriptive Statistics
Doherty ME
Early Intervention
Gestational Age
Grandmaison Dumond L
Human
Infant
Infant High Risk
Neonatologists
Paediatrics & Child Health
Palliative Care -- In Infancy and Childhood
Perinatal Care
Perinatal Death
Power L
Prenatal Diagnosis
Program Evaluation
Record Review
Referral And Consultation
Retrospective Design
Stoppels N
Terminal Care
Treatment Outcomes
Williams R
Work Experiences
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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March 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.
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March 2021 List
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2020.29082" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamanetworkopen.2020.29082</a>
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Title
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Parent-Reported Symptoms and Medications Used Among Children With Severe Neurological Impairment
Publisher
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JAMA Network Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Infant; Child; Comorbidity; Female; Male; Child Preschool; Adolescence; Data Analysis Software; Human; Confidence Intervals; Descriptive Statistics; Record Review; Health Resource Utilization; Cross Sectional Studies; Funding Source; Scales; Severity of Illness; Central Nervous System Agents -- Therapeutic Use; Nervous System Diseases -- Epidemiology -- In Adolescence; Nervous System Diseases -- Epidemiology -- In Infancy and Childhood; Nervous System Diseases -- Symptoms; Peripheral Nervous System Agents -- Therapeutic Use; Polypharmacy
Creator
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Feinstein JA; Feudtner C; Blackmer AB; Valuck RJ; Fairclough DL; Holstein J; Gregoire LA; Samay S; Kempe A
Description
An account of the resource
Key Points: Question: In children with severe neurological impairment (SNI) who cannot self-report, can comprehensive parent-reported symptom assessments inform medication use? Findings: In this cross-sectional study of 100 children with SNI and polypharmacy, parents reported that children experienced multiple concurrent high-distress symptoms, notably irritability (65.0%), insomnia (55.0%), and pain (54.0%). Although higher symptom burdens were associated with increasing polypharmacy, opportunities existed to optimize pharmacotherapy; for example, among 54.0% of children with pain, only 61.0% were prescribed an analgesic. Meaning: Comprehensive parent-reported symptom data paired with medication data could help clinicians identify targets for personalized symptom management, including underrecognized or undertreated symptoms. This cross-sectional study examines whether higher global symptom scores are associated with use of more medications and assesses associations between specific symptoms and medications among children with severe neurological impairment. Importance: Children with severe neurological impairment (SNI) often take multiple medications to treat problematic symptoms. However, for children who cannot self-report symptoms, no system exists to assess multiple symptoms and their association with medication use. Objectives: To assess the prevalence of 28 distinct symptoms, test whether higher global symptom scores (GSS) were associated with use of more medications, and assess the associations between specific symptoms and medications. Design, Setting, and Participants: This cross-sectional study was conducted between April 1, 2019, and December 31, 2019, using structured parent-reported symptom data paired with clinical and pharmacy data, at a single-center, large, hospital-based special health care needs clinic. Participants included children aged 1 to 18 years with SNI and 5 or more prescribed medications. Data analysis was performed from April to June 2020. Exposure: During routine clinical visits, parent-reported symptoms were collected using the validated 28-symptom Memorial Symptom Assessment Scale (MSAS) and merged with clinical and pharmacy data. Main Outcomes and Measures: Symptom prevalence, counts, and GSS (scored 0-100, with 100 being the worst) were calculated, and the association of GSS with medications was examined. To evaluate associations between symptom-medication pairs, the proportion of patients with a symptom who used a medication class or specific medication was calculated. Results: Of 100 patients, 55.0% were boys, the median (interquartile range [IQR]) age was 9 (5-12) years, 62.0% had 3 or more complex chronic conditions, 76.0% took 10 or more medications, and none were able to complete the MSAS themselves. Parents reported a median (IQR) of 7 (4-10) concurrent active symptoms. The median (IQR) GSS was 12.1 (5.4-20.8) (range, 0.0-41.2) and the GSS was 9.8 points (95% CI, 5.5-14.1 points) higher for those with worse recent health than usual. Irritability (65.0%), insomnia (55.0%), and pain (54.0%) were the most prevalent symptoms. Each 10-point GSS increase was associated with 12% (95% CI, 4%-19%) higher medication counts, adjusted for age and complex chronic condition count. Among the 54.0% of children with reported pain, 61.0% were prescribed an analgesic. Conclusions and Relevance: These findings suggest that children with SNI reportedly experience substantial symptom burdens and that higher symptom scores are associated with increased medication use. Paired symptom-medication data may help clinicians identify targets for personalized symptom management, including underrecognized or undertreated symptoms.
Identifier
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<a href="http://doi.org/10.1001/jamanetworkopen.2020.29082" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2020.29082</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adolescence
Blackmer AB
Central Nervous System Agents -- Therapeutic Use
Child
Child Preschool
Comorbidity
Confidence Intervals
Cross Sectional Studies
Data Analysis Software
Descriptive Statistics
Fairclough DL
Feinstein JA
Female
Feudtner C
Funding Source
Gregoire LA
Health Resource Utilization
Holstein J
Human
Infant
JAMA Network Open
Kempe A
Male
March 2021 List
Nervous System Diseases -- Epidemiology -- In Adolescence
Nervous System Diseases -- Epidemiology -- In Infancy and Childhood
Nervous System Diseases -- Symptoms
Peripheral Nervous System Agents -- Therapeutic Use
Polypharmacy
Record Review
Samay S
scales
Severity of Illness
Valuck RJ
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Special Edition #1 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.007" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.007</a>
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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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Bereaved Parents' Perceptions of Infant Suffering in the NICU
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Neonatal Intensive Care Units; Newborn Infant; Infant; intensive care; Mothers; Neonatal; NICU; Parents; Perception; suffering
Creator
An entity primarily responsible for making the resource
Fortney CA; Baughcum AE; Moscato EL; Winning AM; Keim MC; Gerhardt CA
Description
An account of the resource
CONTEXT: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe their infant is suffering may alter treatment goals based on their perceptions; however, it is unknown how parents come to believe that their infant may be suffering. OBJECTIVES: To examine bereaved parents' perceptions of infant suffering in the NICU. METHODS: Parents completed a qualitative interview exploring their perceptions of the level of suffering that their infant experienced at the end of life. Parents whose infant died in a large Midwestern Level IV regional referral NICU from July 2009 to July 2014 were invited to participate. Thirty mothers and 16 fathers from 31 families (31 of 249) participated in telephone interviews between three months and five years after their infant's death. RESULTS: Four themes emerged from the qualitative analysis: 1) the presence/absence of suffering, 2) indicators of suffering, 3) temporal components of suffering (trajectory), and 4) influence of perceived suffering on parents, infants, and clinical decision making. CONCLUSION: Parents used signs exhibited by infants, as well as information they received from the health care team to form their perceptions of suffering. Perceived suffering followed different trajectories and influenced the decisions that parents made for their infant. Soliciting parent perspectives may lead to improvements in the understanding of infant well-being, particularly suffering, as well as how parents rely on these perceptions to make treatment decisions for their infant.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.007</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
2022 Special Edition 1 - Parent Perspectives
Baughcum AE
Fortney CA
Gerhardt CA
Infant
Intensive Care
Journal of Pain and Symptom Management
Keim MC
Moscato EL
Mothers
Neonatal
Neonatal Intensive Care Units
Newborn Infant
Nicu
Parents
Perception
Suffering
Winning AM
-
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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June 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
June 2021 List
URL Address
<a href="http://doi.org/10.1038/s41436-019-0708-6" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41436-019-0708-6</a>
Dublin Core
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Title
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Prospective, phenotype-driven selection of critically ill neonates for rapid exome sequencing is associated with high diagnostic yield
Publisher
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Genetics in Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Aged; Critical Illness; exome sequencing; Exome/genetics; Genetic Testing; Humans; Infant; Infant Newborn; intensive care unit; neonates; Phenotype; Prospective Studies; Whole Exome Sequencing
Creator
An entity primarily responsible for making the resource
Gubbels CS; VanNoy GE; Madden JA; Copenheaver D; Yang S; Wojcik MH; Gold NB; Genetti CA; Stoler J; Parad RB; Roumiantsev S; Bodamer O; Beggs AH; Juusola J; Agrawal PB; Yu TW
Description
An account of the resource
PURPOSE: To investigate the impact of rapid-turnaround exome sequencing in critically ill neonates using phenotype-based subject selection criteria. METHODS: Intensive care unit babies aged <6 months with hypotonia, seizures, a complex metabolic phenotype, and/or multiple congenital malformations were prospectively enrolled for rapid (<7 day) trio-based exome sequencing. Genomic variants relevant to the presenting phenotype were returned to the medical team. RESULTS: A genetic diagnosis was attained in 29 of 50 (58%) sequenced cases. Twenty-seven (54%) patients received a molecular diagnosis involving known disease genes; two additional cases (4%) were solved with pathogenic variants found in novel disease genes. In 24 of the solved cases, diagnosis had impact on patient management and/or family members. Management changes included shift to palliative care, medication changes, involvement of additional specialties, and the consideration of new experimental therapies. CONCLUSION: Phenotype-based patient selection is effective at identifying critically ill neonates with a high likelihood of receiving a molecular diagnosis via rapid-turnaround exome sequencing, leading to faster and more accurate diagnoses, reducing unnecessary testing and procedures, and informing medical care.
Identifier
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<a href="http://doi.org/10.1038/s41436-019-0708-6" target="_blank" rel="noreferrer noopener">10.1038/s41436-019-0708-6</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
Aged
Agrawal PB
Beggs AH
Bodamer O
Copenheaver D
Critical Illness
exome sequencing
Exome/genetics
Genetic Testing
Genetics in Medicine
Genetti CA
Gold NB
Gubbels CS
Humans
Infant
Infant Newborn
Intensive Care Unit
June 2021 List
Juusola J
Madden JA
Neonates
Parad RB
Phenotype
Prospective Studies
Roumiantsev S
Stoler J
VanNoy GE
Whole Exome Sequencing
Wojcik MH
Yang S
Yu TW
-
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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June 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
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>
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
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
The topic of the resource
empathy; infant; decision making; semi structured interview; delivery room; responsibility; university hospital; parental attitude; prematurity; conference abstract; human; child; patient care; honesty
Creator
An entity primarily responsible for making the resource
Hendriks M J; Abraham A
Description
An account of the resource
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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Title
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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
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URL Address
<a href="http://doi.org/10.1016/0887-8994(93)90082-n" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/0887-8994(93)90082-n</a>
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Title
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Prospective study of spinal muscular atrophy before age 6 years. DCN/SMA Group
Publisher
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Pediatric Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
1993
Subject
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Male; Child; Humans; Prospective Studies; Female; Child Preschool; Infant; Neurologic Examination; Motor Skills/physiology; Muscle Contraction/physiology; Range of Motion Articular/physiology; Reflex Stretch/physiology; Spinal Muscular Atrophies of Childhood/diagnosis/physiopathology; Sucking Behavior/physiology; tone and motor problems; SMA1; trajectory; characteristics; tongue fasciculation; facial weakness
Creator
An entity primarily responsible for making the resource
Iannaccone S T; Browne R H; Samaha F J; Buncher C R
Description
An account of the resource
Spinal muscular atrophy (SMA) is a common neuromuscular disorder of childhood, associated with a high mortality rate during the first 2 years of life. Most practitioners expect patients with SMA to follow a progressive course with loss of muscle strength and function over 2-10 years. Counselling sessions with parents frequently emphasize the high mortality rate and risk for respiratory failure. The progressive nature of SMA has been attributed to the loss of motor neurons. Fifty-eight children, ages 6 years and younger, were examined between January, 1987, and April, 1992, as part of a large, multicenter collaborative study of SMA. Muscle function was evaluated at regular intervals using a standardized protocol that was demonstrated to be reliable. We determined a prevalence of 56% for tongue fasciculations, a prevalence of 22% for facial weakness, and persistent deep tendon reflexes in one patient. Improved motor function and acquired milestones during the study were documented. This work should contribute toward a better understanding of the natural history of SMA.
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<a href="http://doi.org/10.1016/0887-8994(93)90082-n" target="_blank" rel="noreferrer noopener">10.1016/0887-8994(93)90082-n</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).
1993
Browne R H
Buncher C R
characteristics
Child
Child Preschool
facial weakness
Female
Humans
Iannaccone S T
Infant
Male
Motor Skills/physiology
Muscle Contraction/physiology
Neurologic Examination
Pediatric Neurology
Prospective Studies
Range of Motion Articular/physiology
Reflex Stretch/physiology
Samaha F J
SMA1
Spinal Muscular Atrophies of Childhood/diagnosis/physiopathology
Sucking Behavior/physiology
tone and motor problems
tongue fasciculation
Trajectory
-
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March 2021 List
Text
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March 2021 List
URL Address
<a href="http://doi.org/10.1097/pcc.0000000000002347" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/pcc.0000000000002347</a>
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Title
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Validation of an Electronic Pediatric Index of Mortality 2 Score in a Mixed Quaternary PICU
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Pediatric Critical Care Medicine
Date
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2020
Subject
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Infant; Child; Humans; Severity of Illness Index; Retrospective Studies; Hospital Mortality; Cohort Studies; Intensive Care Units Pediatric; Electronics
Creator
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Joyce EL; Crana CM; Yabes J; Kellum JA
Description
An account of the resource
OBJECTIVE: To assess the validity of an electronic version of the Pediatric Index of Mortality 2 score. DESIGN: Retrospective observational study. SETTING: Pediatric and cardiac ICUs at a quaternary medical center. PATIENTS: Patients more than 60 days old admitted to the PICU or cardiac ICU between January 1, 2010, and December 31, 2014. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: After adapting the Pediatric Index of Mortality 2 score into a version applicable to retrospective electronic health record data, it was validated in a mixed-ICU cohort. A manually ascertained Pediatric Index of Mortality 2 score was directly compared with the electronically derived electronic version of the Pediatric Index of Mortality 2 score in 100 randomly selected patients with good agreement between score components with nine out of 11 components having an intraclass correlation coefficient or Cohen κ greater than or equal to 0.6. In assessing the electronic version of the Pediatric Index of Mortality 2 score in the entire cohort of 12,582 patient encounters, it had good discrimination with area under the receiver operating curve of 0.89, appropriate calibration with no significant difference between observed and expected deaths, and excellent predictive ability with a Brier score of 0.0135. CONCLUSIONS: The Pediatric Index of Mortality 2 score can be adapted to utilize retrospective electronic health record data with acceptable discrimination, calibration and accuracy a large mixed-ICU cohort.
Identifier
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<a href="http://doi.org/10.1097/pcc.0000000000002347" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002347</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
Child
Cohort Studies
Crana CM
Electronics
Hospital Mortality
Humans
Infant
Intensive Care Units Pediatric
Joyce EL
Kellum JA
March 2021 List
Pediatric Critical Care Medicine
Retrospective Studies
Severity Of Illness Index
Yabes J
-
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Title
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Special Edition #1 2022 List
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<a href="http://doi.org/10.1089/jpm.2018.0303" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0303</a>
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Title
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Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care
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Journal of Palliative Medicine
Date
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2019
Subject
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Female; Fetal mortality; hospice; Infant; mothers; Newborn; palliative care; perinatal; Perinatal Care organization & administration; prenatal; Prenatal Diagnosis; Retrospective Studies
Creator
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Kamrath HJ; Osterholm E; Stover-Haney R; George T; O'Connor-Von S; Needle J
Description
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BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing infant interaction with the health care system and by gaining deeper understanding of the maternal experience after being offered perinatal palliative care. METHODS: The study was conducted at a public university-based medical center in the Midwest. Phase 1 consisted of a retrospective review of electronic medical records of 27 mother-infant pairs offered perinatal palliative care, 18 of whom elected to develop a perinatal palliative care. Phase 2 consisted of a focus group and interviews of seven of the mothers. RESULTS: In the initial phase of this study, results revealed differences regarding the infant's end-of-life trajectory, including location of death, number of invasive procedures, and death in the setting of withholding versus withdrawing life-sustaining treatment. Highlighting that without a perinatal palliative care plan in place, the default treatment for infants with prenatally diagnosed life-limiting conditions is likely to be invasive and painful with often times minimal likelihood of long-term survival. Analysis of interview and focus group data revealed three themes: care, choice, and legacy. CONCLUSION: The authors used their experience with the health care system to draw implications for practice from the focus group and interview data, which care can serve to promote women feeling cared for and cared about, as well as promote opportunities for hope during a fragile pregnancy.
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<a href="http://doi.org/10.1089/jpm.2018.0303" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0303</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
2022 Special Edition 1 - Parent Perspectives
Female
Fetal Mortality
George T
Hospice
Infant
Journal of Palliative Medicine
Kamrath HJ
Mothers
Needle J
Newborn
O'Connor-Von S
Osterholm E
Palliative Care
Perinatal
Perinatal Care organization & administration
prenatal
Prenatal Diagnosis
Retrospective Studies
Stover-Haney R
-
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<a href="http://doi.org/10.1542/hpeds.2019-0185" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/hpeds.2019-0185</a>
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Title
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Parent Perspectives During Hospital Readmissions for Children With Medical Complexity: A Qualitative Study
Publisher
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Hospital Pediatrics
Date
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2020
Subject
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Newborn Infant; Preschool Child; Academic Medical Centers; Adolescent; Attitude to Health; Child; Chronic Disease; Continuity of Patient Care; Health Knowledge, Attitudes, Practice; Health Services Accessibility; Infant; Interviews as Topic; Male; Parents; Patient Readmission; Qualitative Research
Creator
An entity primarily responsible for making the resource
Leary JC; Krcmar R; Yoon GH; Freund KM; LeClair AM
Description
An account of the resource
OBJECTIVES: Children with medical complexity (CMC) have high readmission rates, but relatively little is known from the parent perspective regarding care experiences surrounding and factors contributing to readmissions. We aimed to elicit parent perspectives on circumstances surrounding 30-day readmissions for CMC. METHODS: We conducted 20 semistructured interviews with parents of CMC experiencing an unplanned 30-day readmission at 1 academic medical center between December 2016 and January 2018, asking about topics such as previous discharge experiences, medical services and resources, and home environment and social support. Interviews were recorded, professionally transcribed, and analyzed thematically by using a modified grounded theory approach. RESULTS: Children ranged in age from 0 to 15 years, with neurologic complex chronic conditions being predominant (35%). Although the majority of parents did not identify any factors that they perceived to have contributed to readmission, themes emerged regarding challenges associated with chronicity of care and transitions of care that might influence readmissions, including frequency of hospital use, symptom confusion, lack of inpatient continuity, resources needed but not received, and difficulty filling prescriptions. CONCLUSIONS: Parents identified multiple challenges associated with chronicity of medical management and transitions of care for CMC. Future interventions aiming to improve continuity and communication between admissions, ensure that home services are provided when applicable and prescriptions are filled, and provide comprehensive support for families in both the short- and long-term may help improve patient and family experiences while potentially decreasing readmissions.
Identifier
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<a href="http://doi.org/10.1542/hpeds.2019-0185" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2019-0185</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
2022 Special Edition 1 - Parent Perspectives
Academic Medical Centers
Adolescent
Attitude To Health
Child
Chronic Disease
Continuity Of Patient Care
Freund KM
Health Knowledge, Attitudes, Practice
Health Services Accessibility
Hospital Pediatrics
Infant
Interviews As Topic
Krcmar R
Leary JC
LeClair AM
Male
Newborn Infant
Parents
patient readmission
Preschool Child
Qualitative Research
Yoon GH
-
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October 2021 List
Text
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October 2021 List
URL Address
<a href="http://doi.org/10.1891/JNM-D-19-00106" target="_blank" rel="noreferrer noopener">http://doi.org/10.1891/JNM-D-19-00106</a>
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Predictive Ability of an Illness Severity Measure: Implications for Nursing Research
Publisher
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Journal of Nursing Measurement
Date
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2021
Subject
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pediatric; end-of-life; complex chronic conditions; infant; illness severity; measurement testing
Creator
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Lindley LC; Fortney CA; Cozad MJ
Description
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BACKGROUND AND PURPOSE: Illness severity among children with life-limiting illnesses is measured with the pediatric complex chronic conditions (CCC) measure. Developed in 2000/2001, it was revised in 2014 to include infant-specific categories. METHODS: Discrimination, calibration, accuracy, and validation tests were used to examine the predictive performance of the measures. RESULTS: Among the 10,175 infants in the analysis, both measures poorly discriminated-palliative care consultation (C-statistics 0.6396 vs. C-statistics 0.5905) and any inpatient procedure (C-statistics 0.6101 vs. C-statistics 0.5160). The Hosmer-Lemeshow goodness-of-fit tests revealed good calibration for both measures. The original measure was more accurate in predicting end-of-life outcomes-palliative care consultation (Brier Score 0.3892 vs. 0.7787) and any inpatient procedures (Brier Score 0.3115 vs. 0.4738). CONCLUSIONS: The revised measure did not perform any better than the original in predicting end-of-life outcomes among infants.
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<a href="http://doi.org/10.1891/JNM-D-19-00106" target="_blank" rel="noreferrer noopener">10.1891/JNM-D-19-00106</a>
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2021
Complex Chronic Conditions
Cozad MJ
end-of-life
Fortney CA
illness severity
Infant
Journal of Nursing Measurement
Lindley LC
measurement testing
October 2021 List
Pediatric
-
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URL Address
<a href="http://doi.org/10.1097/nnr.0000000000000369" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/nnr.0000000000000369</a>
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Experience of Perinatal Death From the Father's Perspective
Publisher
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Nursing Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Adolescent; Colombia; Emotions; Fathers; Grief; Infant; Male; Middle Aged; Newborn; Perinatal Death; Qualitative Research; Young Adult
Creator
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Lizcano PLDM; Moreno Fergusson ME; Palacios AM
Description
An account of the resource
BACKGROUND: Although perinatal deaths are still a common pregnancy outcome in developing countries, little is known about the effect perinatal death has on fathers. OBJECTIVE: The aim of the study was to understand and describe the meaning of perinatal death in a sample of fathers from northeastern Colombia. METHODS: Using purposive and snowball sampling approaches, we identified 15 participants from northeastern Colombia who agreed to participate. We used a descriptive phenomenological design. Data were collected through in-depth, semistructured interviews. RESULTS: Men suffer in solitude and hide their emotions as they feel the need to be the main supporters of their partners. Three major themes emerged: experience of loss, coming to terms with an irreparable loss, and overcoming the loss. DISCUSSION: While women are receiving care, health staff may neglect or forget men. Men suffer alone while seeking ways of attunement with their partners' emotions to support them during the grieving process. Fathers can overcome and adjust to the loss when they transcend it and find new meaning. Men felt neglected and marginalized at hospitals while their partners were receiving treatment. Health professionals should recognize and acknowledge the pain of fathers who face perinatal death and include them as much as possible in the standard of care. The results identify opportunities for healthcare providers in clinical and outpatient settings to acknowledge the importance of men within the context of pregnancy and to learn about their pain and suffering when they face a perinatal death.
Identifier
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<a href="http://doi.org/10.1097/nnr.0000000000000369" target="_blank" rel="noreferrer noopener">10.1097/nnr.0000000000000369</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
2022 Special Edition 1 - Parent Perspectives
Adolescent
Colombia
Emotions
Fathers
Grief
Infant
Lizcano PLDM
Male
Middle Aged
Moreno Fergusson ME
Newborn
Nursing Research
Palacios AM
Perinatal Death
Qualitative Research
Young Adult
-
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Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2020.10337" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamanetworkopen.2020.10337</a>
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Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity
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JAMA Network Open
Date
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2020
Subject
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Preschool Child; Advance Care Planning; Bereavement; Caregivers; Child; Infant; Interviews as Topic; Male; Multimorbidity; Parents; Terminal Care
Creator
An entity primarily responsible for making the resource
Lord S; Moore C; Beatty M; Cohen E; Rapoport A; Hellmann J; Netten K; Amin R; Orkin J
Description
An account of the resource
Importance: Advance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course and timing of death; however, there is a paucity of literature that describes the experience of ACP from the perspective of bereaved family caregivers of CMC. Objective: To explore the experiences of bereaved family caregivers with ACP for CMC. Design, Setting, and Participants: This qualitative study included 12 interviews with 13 bereaved family caregivers of CMC whose deaths had occurred in the 5 years before study commencement (2013-2018). Participants were recruited at a single tertiary care pediatric center; CMC were treated by the Complex Care or Long-term Ventilation clinic in Toronto, Ontario, Canada. Data were collected from July to October 2018. Thematic analysis with an inductive approach was used. Exposures: Qualitative interviews were conducted using purposive sampling of bereaved family caregivers using semistructured interviews that were recorded and transcribed. Interviews were conducted until saturation was reached. Main Outcomes and Measures: Transcripts were analyzed to create themes that characterized caregiver experiences with ACP. Results: A total of 13 family caregivers were interviewed in 12 interviews, all of whom were parents (12 [92%] women, 1 [8%] man) of a deceased child (aged 7 months to 12 years). Themes were divided in the 3 following categories, which align with the Donabedian model for health service quality: (1) structure of care, (2) ACP process, and (3) end-of-life experience. Notable subthemes for this population included the importance of accounting for parental expertise in the child's care, recurrent experiences with life-threatening events, relative shock of the timing of death, and the multiple losses that caregivers experienced. Conclusions and Relevance: In this study, parental experiences revealed that there are key aspects of the structure of the child's care, process around ACP, and end-of-life care experiences that provide important reflections on ACP that warrant future study.
Identifier
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<a href="http://doi.org/10.1001/jamanetworkopen.2020.10337" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2020.10337</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
2022 Special Edition 1 - Parent Perspectives
Advance Care Planning
Amin R
Beatty M
Bereavement
Caregivers
Child
Cohen E
Hellmann J
Infant
Interviews As Topic
JAMA Network Open
Lord S
Male
Moore C
multimorbidity
Netten K
Orkin J
Parents
Preschool Child
Rapoport A
Terminal Care
-
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Title
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March 2022 List
Text
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March 2022 List
URL Address
<a href="http://doi.org/10.1016/j.anpede.2021.10.003" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.anpede.2021.10.003</a>
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Title
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Perinatal palliative care
Publisher
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Anales de Pediatría (English Edition)
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Bereavement; Child; Infant; Life-limiting condition; Life-threatening condition; Neonatal death; Newborn; Palliative Care; Perinatal Care; Perinatal palliative care; Pregnancy; Quality of Life
Creator
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Martín-Ancel A; Pérez-Muñuzuri A; González-Pacheco N; Boix H; Espinosa Fernández MG; Sánchez-Redondo MD; Cernada M; Couce ML
Description
An account of the resource
Perinatal Palliative Care is a model of care designed to prevent and treat the physical, spiritual, emotional, and social needs of fetuses and newborn infants with life-threatening or life-limiting conditions. The care extends to the infant's family. It is delivered by an interdisciplinary team to improve the quality of life from the time of diagnosis (possibly in utero) into death and bereavement (days, months or years later). To guarantee the access of this vulnerable population to high quality palliative care, structured programs and protocols need to be further developed in tertiary hospitals that treat highly complex obstetric and neonatal pathologies. Basic training is required for all the professionals involved.
Identifier
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<a href="http://doi.org/10.1016/j.anpede.2021.10.003" target="_blank" rel="noreferrer noopener">10.1016/j.anpede.2021.10.003</a>
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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
Anales de Pediatría (English Edition)
Bereavement
Boix H
Cernada M
Child
Couce ML
Espinosa Fernández MG
González-Pacheco N
Infant
Life-limiting Condition
Life-threatening Condition
March 2022 List
Martín-Ancel A
Neonatal Death
Newborn
Palliative Care
Pérez-Muñuzuri A
Perinatal Care
Perinatal Palliative Care
Pregnancy
Quality Of Life
Sánchez-Redondo MD
-
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Title
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August 2021 List
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August 2021 List
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<a href="http://doi.org/10.4037/ajcc2020478" target="_blank" rel="noreferrer noopener">http://doi.org/10.4037/ajcc2020478</a>
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Navigator-Based Intervention to Support Communication in the Pediatric Intensive Care Unit: A Pilot Study
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American Journal of Critical Care
Date
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2020
Subject
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Infant; Adolescent; Child; Preschool Child; Parents/psychology; Emotions; Communication; Family/psychology; Attitude of Health Personnel; Professional-Family Relations; Socioeconomic Factors; Decision Making; Pilot Projects; Patient Discharge; Intensive Care Units Pediatric/organization & administration/standards
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Michelson KN; Charleston E; Aniciete DY; Sorce LR; Fragen P; Persell SD; Ciolino JD; Clayman ML; Rychlik K; Jones V A; Spadino P; Malakooti M; Brown M; White D
Description
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BACKGROUND: Communication in the pediatric intensive care unit (PICU) between families and the health care team affects the family experience, caregiver psychological morbidity, and patient outcomes. OBJECTIVE: To test the feasibility of studying and implementing a PICU communication intervention called PICU Supports, and to assess families' and health care teams' perceptions of the intervention. METHODS: This study involved patients requiring more than 24 hours of PICU care. An interventionist trained in PICU-focused health care navigation, a "navigator," met with parents and the health care team to discuss communication, decision-making, emotional, informational, and discharge or end-of-life care needs; offered weekly family meetings; and checked in with parents after PICU discharge. The feasibility of implementing the intervention was assessed by tracking navigator activities. Health care team and family perceptions were assessed using surveys, interviews, and focus groups. RESULTS: Of 53 families approached about the study, 35 (66%) agreed to participate. The navigator met with parents on 71% and the health care team on 85% of possible weekdays, and completed 86% of the postdischarge check-ins. Family meetings were offered to 95% of eligible patients. The intervention was rated as helpful by 97% of parents, and comments during interviews were positive. CONCLUSIONS: The PICU Supports intervention is feasible to implement and study and is viewed favorably by parents.
Identifier
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<a href="http://doi.org/10.4037/ajcc2020478" target="_blank" rel="noreferrer noopener">10.4037/ajcc2020478</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adolescent
American Journal of Critical Care
Aniciete DY
Attitude Of Health Personnel
August 2021 List
Brown M
Charleston E
Child
Ciolino JD
Clayman ML
Communication
Decision Making
Emotions
Family/psychology
Fragen P
Infant
Intensive Care Units Pediatric/organization & administration/standards
Jones V A
Malakooti M
Michelson KN
Parents/psychology
Patient Discharge
Persell SD
Pilot Projects
Preschool Child
Professional-family Relations
Rychlik K
Socioeconomic Factors
Sorce LR
Spadino P
White D
-
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Title
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April 2021 List
Text
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April 2021 List
URL Address
<a href="http://doi.org/10.1016/j.socscimed.2020.113312" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.socscimed.2020.113312</a>
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Title
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The grief ritual of extracting and donating human milk after perinatal loss
Publisher
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Social Science & Medicine
Date
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2020
Subject
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Infant; Female; Humans; Infant Mortality; Pregnancy; Perinatal loss; Mothers; Stillbirth; Ceremonial Behavior; Grief; Ambiguous loss; Continuing bonds; Grief rituals; Meaning-making in loss; Milk donation; Milk Banks; Milk Human
Creator
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Oreg A
Description
An account of the resource
Perinatal loss is a major life crisis involving multiple losses, including the loss of future hopes and dreams, of being pregnant, and of self-esteem, to name a few. In the present study I focus on mothers who experienced perinatal loss and chose to extract and donate their human milk to nonprofit milk banks. Through an analysis of 88 women's personal testimonials, collected between 2017 and 2019, I uncover the ritualistic attributes of the extraction and donation process. The bereaved mothers in this study experienced ambiguous loss, comprising the combination of the physical absence and psychological presence of their baby. The process of extracting and donating their milk constitutes a grief ritual, allowing mothers to maintain and reconstruct the continuing bonds with their babies. The present study extends current understandings of organ donation in times of loss, highlighting the unique nature and consequences of the milk donation process through its conceptualization as a grief ritual.
Identifier
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<a href="http://doi.org/10.1016/j.socscimed.2020.113312" target="_blank" rel="noreferrer noopener">10.1016/j.socscimed.2020.113312</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
Ambiguous loss
April 2021 List
Ceremonial Behavior
Continuing bonds
Female
Grief
Grief rituals
Humans
Infant
Infant Mortality
Meaning-making in loss
Milk Human
Milk Banks
Milk donation
Mothers
Oreg A
Perinatal Loss
Pregnancy
Social science & medicine
Stillbirth
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Title
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October 2021 List
Text
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October 2021 List
URL Address
<a href="http://doi.org/10.1542/hpeds.2019-0323" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/hpeds.2019-0323</a>
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Care Coordination Program for Children With Complex Chronic Conditions Discharged From a Rural Tertiary-Care Academic Medical Center
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Hospital Pediatrics
Date
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2020
Subject
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Academic Medical Centers; Adolescent; Child; Preschool Child; Chronic Disease; Hospital Emergency Service; Infant; Patient Discharge; Retrospective Studies
Creator
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Parker CL; Wall B; Tumin D; Stanley R; Warren L; Deal K; Stroud T; Crickmore K; Ledoux M
Description
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OBJECTIVES: Hospital discharge offers an opportunity to initiate coordination of follow-up care, preventing readmissions or emergency department (ED) recidivism. We evaluated how revisits and costs of care varied in a 12-month period between children in a care coordination program at our center (enrolled after hospital discharge with a tracheostomy or on a ventilator) and children with complex chronic condition discharges who were not enrolled. METHODS: Children ages 1 to 17 years were retrospectively included if they had a hospital discharge in 2017 with an International Classification of Diseases, 10th Revision code meeting complex chronic condition criteria or if they were in active follow-up with the care coordination program. Revisits and total costs of care were compared over 2018 for included patients. RESULTS: Seventy patients in the program were compared with 56 patients in the control group. On bivariate analysis, the median combined number of hospitalizations and ED visits in 2018 was lower among program participants (0 vs 1; P = .033), and program participation was associated with lower median total costs of care in 2018 ($700 vs $3200; P = .024). On multivariable analysis, care coordination program participation was associated with 59% fewer hospitalizations in 2018 (incidence rate ratio: 0.41; 95% confidence interval: 0.23 to 0.75; P = .004) but was not significantly associated with reduced ED visits or costs. CONCLUSIONS: The care coordination program is a robust service spanning the continuum of patient care. We found program participation to be associated with reduced rehospitalization, which is an important driver of costs for children with medical complexity.
Identifier
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<a href="http://doi.org/10.1542/hpeds.2019-0323" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2019-0323</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
Academic Medical Centers
Adolescent
Child
Chronic Disease
Crickmore K
Deal K
Hospital Emergency Service
Hospital Pediatrics
Infant
Ledoux M
October 2021 List
Parker CL
Patient Discharge
Preschool Child
Retrospective Studies
Stanley R
Stroud T
Tumin D
Wall B
Warren L
-
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Title
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November 2019 List
Text
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November 2019 List
URL Address
<a href="http://doi.org/10.1038/jp.2017.160" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/jp.2017.160</a>
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Parental assessment of comfort in newborns affected by life-limiting conditions treated by a standardized neonatal comfort care program
Publisher
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Journal of Perinatology
Date
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2018
Subject
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Palliative Care/mt [Methods]; Parents/px [Psychology]; Patient Comfort/st [Standards]; Adult; Female; Humans; Infant; Intensive Care; Male; Neonatal/og [Organization & Administration]; New York; Newborn; Patient Care Team/og [Organization & Administration]; Practice Guidelines as Topic; Prospective Studies; Qualitative Research; Surveys and Questionnaires; Young Adult
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Parravicini E; Daho M; Foe G; Steinwurtzel R; Byrne M
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OBJECTIVE: To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program. STUDY DESIGN: Participants were parents (n=35 families) who elected comfort care for their newborns diagnosed with life-limiting conditions. Standardized comfort measures including family/infant bonding, warmth, nutrition/hydration and pain/discomfort management were provided to all infants. Parents consented to receive a questionnaire with quantitative response options and open-ended questions. RESULTS: Forty-two questionnaires (26 from mothers and 16 from fathers) were collected and analyzed. Most parents reported that their child was treated with respect, in a caring, peaceful and non-invasive environment. To the question 'Do you think that overall your baby received comfort' mode response was 'always'. CONCLUSION: Parents of infants with life-limiting conditions perceive that their babies experience comfort as a result of the care provided by the standardized Neonatal Comfort Care Program.
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<a href="http://doi.org/10.1038/jp.2017.160" target="_blank" rel="noreferrer noopener">10.1038/jp.2017.160</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Adult
Byrne M
Daho M
Female
Foe G
Humans
Infant
Intensive Care
Journal Of Perinatology
Male
Neonatal/og [Organization & Administration]
New York
Newborn
November 2019 List
Palliative Care/mt [methods]
Parents/px [psychology]
Parravicini E
Patient Care Team/og [Organization & Administration]
Patient Comfort/st [Standards]
Practice Guidelines As Topic
Prospective Studies
Qualitative Research
Steinwurtzel R
Surveys And Questionnaires
Young Adult
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Title
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July 2021 List
Text
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July 2021 List
URL Address
<a href="http://doi.org/10.1186/s12910-021-00624-4" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12910-021-00624-4</a>
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Title
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Something must happen before first breath
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BMC Medical Ethics
Date
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2021
Subject
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Infant; Newborn; Brain’s activation; Brain’s development; Extrauterine environment; First breath; Foetus; Human birth
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Polese D; Fagioli M; Virgili F; Fiori Nastro P
Description
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BACKGROUND: Definition and concept of the 'beginning of human life' are weakened by co-existing contrasting hypotheses based on humanistic or religious beliefs rather than scientific foundations. This plethora of conceptually distant views have important common concerns in different fields of science and shape, in turn, several societal aspects including laws related, for instance, to inheritance eligibility or abortion, end-of-life care and euthanasia, and reproductive technology. Also, they are fundamental to evaluate opportunity for resuscitation vs. palliative care in extremely preterm infants. In this article, we address one of the most common tenets in medicine: the acceptance that human life starts with first breath, even though several events are well-documented to take place before its occurrence. MAIN TEXT: Several studies show how pivotal physiological events take place before first breath. Evidence of a number of neurological events occurring before first breath opens the way to the primacy of the Central Nervous System, given its immediate extra-uterine activation at birth. This activation eventually sets specific physiological conditions that allow the complex sequence of events determining the muscle activity associated with the influx of air in the lung and the settling of a continuous and successful extra-uterine respiration. We would like to invite the scientific community to endorse a clear-cut position against the paradigm of 'first breath' as the beginning of life. Herein, we also assume how, a still undefined, yet possibly specific quid in the external environment triggers further physiological response in newborns. Better understanding of the critical events that occur at the beginning of human life is likely to cause great concern and expectations in scientists, researchers and physicians working in the domain of brain, and its physiology, and mental health. CONCLUSIONS: The comparison between beliefs and evidence-based observations generates confusion, misperceptions and false expectations in society, hence, in the scientific and medical community. Different and more solid alternatives about the carachterization of the 'beginning of human life' are indeed available and require to be explored and defined.
Identifier
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<a href="http://doi.org/10.1186/s12910-021-00624-4" target="_blank" rel="noreferrer noopener">10.1186/s12910-021-00624-4</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Bmc Medical Ethics
Brain’s activation
Brain’s development
Extrauterine environment
Fagioli M
Fiori Nastro P
First breath
Foetus
Human birth
Infant
July 2021 List
Newborn
Polese D
Virgili F
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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
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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infant; neonate; neuropalliative care; pediatric; preterm; quality of life
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Rent SM; Bidegain M; Bost MH; Hornik C; Lemmon ME
Description
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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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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
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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October 2021 List
Text
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October 2021 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2019-001849" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2019-001849</a>
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Perinatal palliative care: a dedicated care pathway
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BMJ Supportive & Palliative Care
Date
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2021
Subject
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Child; Hospice and Palliative Care Nursing; Hospice Care; Infant; life-limiting diseases; life-threatening diseases; neonatal mortality; neonatal pain management; Newborn Infant; paediatric palliative care; Palliative Care; Parents; perinatal palliative care; Pregnancy; Terminal Care
Creator
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Rusalen F; Cavicchiolo ME; Lago P; Salvadori S; Benini F
Description
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OBJECTIVE: Ensure access to perinatal palliative care (PnPC) to all eligible fetuses/infants/parents. DESIGN: During 12 meetings in 2016, a multidisciplinary work-group (WG) performed literature review (Grading of Recommendations, Assessment, Development and Evaluation (GRADE) method was applied), including the ethical and legal references, in order to propose shared care pathway. SETTING: Maternal-Infant Department of Padua's University Hospital. PATIENTS: PnPC eligible population has been divided into three main groups: extremely preterm newborns (first group), newborns with prenatal/postnatal diagnosis of life-limiting and/or life-threatening disease and poor prognosis (second group) and newborns for whom a shift to PnPC is appropriate after the initial intensive care (third group). INTERVENTIONS: The multidisciplinary WG has shared care pathway for these three groups and defined roles and responsibilities. MAIN OUTCOME MEASURES: Prenatal and postnatal management, symptom's treatment, end-of-life care. RESULTS: The best care setting and the best practice for PnPC have been defined, as well as the indications for family support, corpse management and postmortem counselling, as well suggestion for conflicts' mediation. CONCLUSIONS: PnPC represents an emerging field within the paediatric palliative care and calls for the development of dedicated shared pathways, in order to ensure accessibility and quality of care to this specific population of newborns.
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2019-001849" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-001849</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
Benini F
BMJ Supportive & Palliative Care
Cavicchiolo ME
Child
Hospice And Palliative Care Nursing
Hospice Care
Infant
Lago P
Life-limiting Diseases
life-threatening diseases
Neonatal mortality
neonatal pain management
Newborn Infant
October 2021 List
paediatric palliative care
Palliative Care
Parents
Perinatal Palliative Care
Pregnancy
Rusalen F
Salvadori S
Terminal Care
-
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Title
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March 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
March 2021 List
URL Address
<a href="http://doi.org/10.1097/pcc.0000000000002417" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/pcc.0000000000002417</a>
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Title
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Prediction of Acquired Morbidity Using Illness Severity Indices in Pediatric Intensive Care Patients
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Infant; Adolescent; Child; Humans; Risk Factors; Child Preschool; Severity of Illness Index; Retrospective Studies; Infant Newborn; Hospital Mortality; Singapore/epidemiology; Intensive Care Units Pediatric; Morbidity; Critical Care
Creator
An entity primarily responsible for making the resource
Senna S; Ong C; Wong JJ; Allen JC Jr; Sultana R; Lee JH
Description
An account of the resource
OBJECTIVES: To assess the ability of two illness severity scores, Pediatric Logistic Organ Dysfunction Score 2 and Pediatric Index of Mortality 3, in predicting PICU-acquired morbidity. DESIGN: Retrospective chart review conducted from April 2015 to March 2016. SETTING: Single-center study in a multidisciplinary PICU in a tertiary pediatric hospital in Singapore. PATIENTS: The study included all index admissions of patients 0-18 years old to the PICU during the study period. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Three outcomes were assessed at hospital discharge: mortality, survival with new morbidity defined as an increase in the Functional Status Scale score of greater than or equal to 3 points from baseline, and survival without morbidity. Of 577 consecutive admissions, 95 were excluded: 82 readmissions, 10 patients greater than or equal to 18 years old, two patients with missing baseline data, and one transferred to another PICU. Of 482 patients, there were 37 hospital deaths (7.7%) and 39 (8.1%) with acquired new morbidity. Median admission Pediatric Logistic Organ Dysfunction Score 2 and Pediatric Index of Mortality 3 scores differed among the three outcome groups. In addition, differences were found in emergency admission and neurologic diagnosis rates, PICU mechanical ventilation usage rates, and PICU length of stay. The highest proportion of neurologic diagnoses was observed in the new morbidity group. The final model simultaneously predicted risks of mortality, survival with new morbidity and survival without morbidity using admission Pediatric Logistic Organ Dysfunction Score 2 score, admission type, neurologic diagnosis, and preexisting chronic disease. Pediatric Logistic Organ Dysfunction Score 2 was superior to Pediatric Index of Mortality 3 in predicting risks of mortality and new morbidity, as indicated by volume under surface values of 0.483 and 0.362, respectively. CONCLUSIONS: Risk of mortality, survival with new morbidity, and survival without morbidity can be predicted simultaneously using admission Pediatric Logistic Organ Dysfunction Score 2, admission type, admission diagnosis, and preexisting chronic disease. Future independent studies will be required to validate the proposed model before clinical implementation.
Identifier
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<a href="http://doi.org/10.1097/pcc.0000000000002417" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002417</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adolescent
Allen JC Jr
Child
Child Preschool
Critical Care
Hospital Mortality
Humans
Infant
Infant Newborn
Intensive Care Units Pediatric
Lee JH
March 2021 List
Morbidity
Ong C
Pediatric Critical Care Medicine
Retrospective Studies
Risk Factors
Senna S
Severity Of Illness Index
Singapore/epidemiology
Sultana R
Wong JJ
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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February 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2022 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-047464" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-047464</a>
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Title
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Surgical Interventions During End-of-Life Hospitalizations in Children's Hospitals
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Adolescent; Age Factors; Biopsy; Catheterization; Child; Chronic Disease; Ethnicity; Hospitalization; Infant; International Classification of Diseases; Newborn Infant; Pediatric Hospitals; Preschool Child; Prosthesis Implantation; Race Factors; Retrospective Studies; Salvage Therapy; Surgical Procedures, Operative; Terminal Care; United States; Young Adult
Creator
An entity primarily responsible for making the resource
Traynor MD; Antiel RM; Camazine MN; Blinman TA; Nance ML; Eghtesady P; Lam SK; Hall M; Feudtner C
Description
An account of the resource
OBJECTIVES: To characterize patterns of surgery among pediatric patients during terminal hospitalizations in children's hospitals. METHODS: We reviewed patients ≤20 years of age who died among 4 424 886 hospitalizations from January 2013-December 2019 within 49 US children's hospitals in the Pediatric Health Information System database. Surgical procedures, identified by International Classification of Diseases procedure codes, were classified by type and purpose. Descriptive statistics characterized procedures, and hypothesis testing determined if undergoing surgery varied by patient age, race and ethnicity, or the presence of chronic complex conditions (CCCs). RESULTS: Among 33 693 terminal hospitalizations, the majority (n = 30 440, 90.3%) of children were admitted for nontraumatic causes. Of these children, 15 142 (49.7%) underwent surgery during the hospitalization, with the percentage declining over time (P < .001). When surgical procedures were classified according to likely purpose, the most common were to insert or address hardware or catheters (31%), explore or aid in diagnosis (14%), attempt to rescue patient from mortality (13%), or obtain a biopsy (13%). Specific CCC types were associated with undergoing surgery. Surgery during terminal hospitalization was less likely among Hispanic children (47.8%; P < .001), increasingly less likely as patient age increased, and more so for Black, Asian American, and Hispanic patients compared with white patients (P < .001). CONCLUSIONS: Nearly half of children undergo surgery during their terminal hospitalization, and accordingly, pediatric surgical care is an important aspect of end-of-life care in hospital settings. Differences observed across race and ethnicity categories of patients may reflect different preferences for and access to nonhospital-based palliative, hospice, and end-of-life care.
Identifier
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<a href="http://doi.org/10.1542/peds.2020-047464" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-047464</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
Adolescent
Age Factors
Antiel RM
Biopsy
Blinman TA
Camazine MN
Catheterization
Child
Chronic Disease
Eghtesady P
Ethnicity
February 2022 List
Feudtner C
Hall M
Hospitalization
Infant
International Classification of Diseases
Lam SK
Nance ML
Newborn Infant
pediatric hospitals
Pediatrics
Preschool Child
Prosthesis Implantation
Race Factors
Retrospective Studies
Salvage Therapy
Surgical Procedures, Operative
Terminal Care
Traynor MD
United States
Young Adult
-
Dublin Core
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Title
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November 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
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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Title
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Parental bereavement - impact of death of neonates and children under 12 years on personhood of parents: a systematic scoping review
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
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
An account of the resource
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
-
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Title
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January 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2022 List
URL Address
<a href="http://doi.org/10.1007/s00431-021-04139-3" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00431-021-04139-3</a>
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Title
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Neonatal donation: are newborns too young to be recognized?
Publisher
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European Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Infant; Retrospective Studies; Newborn Infant; End-of-life care; Tissue and Organ Procurement; Brain Death; Tissue Donors; Pediatric; Organ donation; Neonatal; Death; Tissue donation
Creator
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Vileito A; Hulzebos CV; Toet MC; Baptist DH; Verhagen EAA; Siebelink MJ
Description
An account of the resource
Neonatal organ and tissue donation is not common practice in the Netherlands. At the same time, there is a transplant waiting list for small size-matched organs and tissues. Multiple factors may contribute to low neonatal donation rates, including a lack of awareness of this option. This study provides insight into potential neonatal organ and tissue donors and reports on how many donors were actually reported to the procurement organization. We performed a retrospective analysis of the mortality database and medical records of two largest neonatal intensive care units (NICUs) in the Netherlands. This study reviewed records of neonates with a gestational age >37 weeks and weight >3000g who died in the period from January 1, 2005 through December 31, 2016. During the study period, 259 term-born neonates died in the two NICUs. In total, 132 neonates with general contra-indications for donation were excluded. The medical records of 127 neonates were examined for donation suitability. We identified five neonates with documented brain death who were not recognized as potential organ and/or tissue donors. Of the remaining neonates, 27 were found suitable for tissue donation. One potential tissue donor had been reported to the procurement organization. In three cases, the possibility of donation was brought up by parents.Conclusion: A low proportion (2%) of neonates who died in the NICUs were found suitable for organ donation, and a higher proportion (12%) were found suitable for tissue donation. We suggest that increased awareness concerning the possibility of neonatal donation would likely increase the identification of potential neonatal donors. What is Known: • There is an urgent need for very small organs and tissues from neonatal donors What is New: • A number of neonates who died in the NICU were suitable organ or/and tissue donors but were not recognized as donors. • Knowledge on neonatal donation possibilities is also important for proper counseling of parents who sometimes inquire for the possibility of organ and tissue donation.
Identifier
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<a href="http://doi.org/10.1007/s00431-021-04139-3" target="_blank" rel="noreferrer noopener">10.1007/s00431-021-04139-3</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
Baptist DH
Brain Death
Death
End-of-life Care
European Journal of Pediatrics
Hulzebos CV
Infant
January 2022 List
Neonatal
Newborn Infant
Organ Donation
Pediatric
Retrospective Studies
Siebelink MJ
Tissue and Organ Procurement
tissue donation
Tissue Donors
Toet MC
Verhagen EAA
Vileito A
-
Dublin Core
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Title
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2020 Oncology List
Text
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Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1097/MOP.0000000000000851" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/MOP.0000000000000851</a>
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Title
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Advances in pediatric psychooncology
Publisher
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Current Opinion in Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
child; human; palliative therapy; adult; childhood cancer; review; young adult; sibling; attention; distress syndrome; outcome assessment; cancer patient; infant; psychosocial care; bereavement; cancer center; psycho-oncology; survivorship; patient reported outcome; chimeric antigen receptor T-cell immunotherapy; evidence based practice center; hereditary tumor syndrome; toddler
Creator
An entity primarily responsible for making the resource
Wiener L; Devine K A; Thompson A L
Description
An account of the resource
Purpose of reviewThis article reviews the current literature on psychosocial care of children with cancer with particular focus on evidence-based standards of care, including developments in systematic distress screening, utilization of patient-reported outcomes, evidence-based interventions, survivorship, palliative care and bereavement.Recent findingsAlthough attention to the psychosocial needs of the child and family is increasingly recognized as an essential element of care for children with cancer, implementing evidence-based care remains suboptimal. Recent efforts have focused on utilizing technology to improve the reach of these interventions and to enhance engagement with special populations, such as adolescents and young adults. Increasing data elucidate the long-term psychological and physical late effects of childhood cancer survivorship and the impact of cancer on siblings and the family. Gaps in clinical care and important directions for future research include the needs of infants and toddlers, overlooked minorities, and patients with hereditary tumor predisposition syndromes, and attention to the psychosocial impact of exciting new treatments, such as autologous chimeric antigen receptor (CAR) T-cell therapy.SummaryThe evidence base for the psychosocial standards of care for children with cancer and their families continues to grow, but more work is needed to successfully implement these standards across pediatric cancer centers.
Identifier
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<a href="http://doi.org/10.1097/MOP.0000000000000851" target="_blank" rel="noreferrer noopener">10.1097/MOP.0000000000000851</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
Adult
Attention
Bereavement
cancer center
Cancer Patient
Child
Childhood Cancer
chimeric antigen receptor T-cell immunotherapy
Current Opinion In Pediatrics
Devine K A
Distress Syndrome
evidence based practice center
hereditary tumor syndrome
Human
Infant
Oncology 2020 List
outcome assessment
Palliative Therapy
patient reported outcome
Psycho-Oncology
psychosocial care
Review
Sibling
Survivorship
Thompson A L
toddler
Wiener L
Young Adult
-
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
2020 Oncology 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
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1002/pbc.27993" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.27993</a>
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Title
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Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
newborn; social support; child; human; adult; female; major clinical study; male; retrospective study; article; priority journal; aged; Bereavement; adolescent; terminal care; quality of life; emotion; Parent; psychologist; social worker; content analysis; interpersonal communication; quantitative analysis; time of death; infant; caregiver; pediatric patient; nurse; support group; thematic analysis; psycho-oncology; open ended questionnaire; childhood cancer/dm [Disease Management]; pediatric oncologist; health care need; social media; worker
Creator
An entity primarily responsible for making the resource
Wiener L; Tager J; Mack J; Battles H; Bedoya S Z; Gerhardt C A
Description
An account of the resource
Background: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents.
Identifier
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<a href="http://doi.org/10.1002/pbc.27993" target="_blank" rel="noreferrer noopener">10.1002/pbc.27993</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adolescent
Adult
Aged
Article
Battles H
Bedoya S Z
Bereavement
Caregiver
Child
childhood cancer/dm [Disease Management]
Content Analysis
Emotion
Female
Gerhardt C A
health care need
Human
Infant
Interpersonal Communication
Mack J
Major Clinical Study
Male
Newborn
Nurse
Oncology 2020 List
open ended questionnaire
Parent
Pediatric Blood and Cancer
pediatric oncologist
pediatric patient
Priority Journal
Psycho-Oncology
Psychologist
Quality Of Life
quantitative analysis
Retrospective Study
social media
Social Support
Social Worker
support group
Tager J
Terminal Care
Thematic Analysis
time of death
Wiener L
worker
-
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 2017 List
URL Address
<a href="https://journals.rcni.com/nursing-children-and-young-people/children-with-lifeshortening-conditions-are-denied-the-support-they-need-says-charity-ncyp.28.7.7.s6" target="_blank" rel="noreferrer">https://journals.rcni.com/nursing-children-and-young-people/children-with-lifeshortening-conditions-are-denied-the-support-they-need-says-charity-ncyp.28.7.7.s6</a>
Dublin Core
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Children with life-shortening conditions are denied the support they need, says charity
Publisher
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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
Healthcare Financing; Palliative Care; Respite Care; Adolescent; Charities; Child; Child Preschool; England; Hospice And Palliative Care Nursing; Humans; Infant; Infant Newborn; State Medicine; Young Adult
Creator
An entity primarily responsible for making the resource
[No authors listed]
Description
An account of the resource
Children who require palliative care are being 'short changed or ignored', according to a survey of services in England by the charity Together for Short Lives.
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<span><span></span><span><a href="https://doi.org/10.7748/ncyp.28.7.7.s6">10.7748/ncyp.28.7.7.s6</a></span></span><span><span><br /></span></span>
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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).
[No authors listed]
2016
Adolescent
August 2017 List
Charities
Child
Child Preschool
England
Healthcare Financing
Hospice And Palliative Care Nursing
Humans
Infant
Infant Newborn
Nursing Children and Young People
Palliative Care
Respite Care
State Medicine
Young Adult
-
Dublin Core
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Title
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2019 Developing World List
Text
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Citation List Month
Developing World 2019 List
URL Address
<a href="http://doi.org/10.1177/1367493518814926" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1367493518814926</a>
Dublin Core
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Title
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Physicians' standpoints on end-of-life decisions at the neonatal intensive care units in Jordan
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
End of life; infant; neonatal
Creator
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Abdel Razeq N M
Description
An account of the resource
The purpose of this cross-sectional descriptive study is to explore pediatricians' and neonatologists' attitudes and standpoints on end-of-life (EOL) decision-making in neonates. Seventy-five physicians, employed fulltime to care for newborns in 23 hospitals in Jordan, completed internationally accepted questionnaires. Most physicians (75%) were supportive of using life-sustaining interventions, irrespective of the severity of the newborns' prognosis and the potential burden of the neonates' disabilities on their families. The general attitude of the physicians (59-88%) was against making decisions that limit life support at EOL; even those infants with what are, in fact, untreatable and disabling medical conditions (56-88%). Most physicians (77%) indicated that ethics committees should be involved in EOL decision-making based on requests from parents, physicians, or both. The results of this study indicate strong pro-life attitudes among the physicians whose role is to take care of infants in Jordan. The results also emphasize the need for (1) the creation of clear EOL-focused regulations and guidelines, (2) the establishment of special ethical committees to inform and assist healthcare providers' efforts during EOL care, and (3) raised awareness and competencies regarding EOL and ethical decision-making among physicians taking care of newborns in Jordan's intensive care units.
Identifier
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<a href="http://doi.org/10.1177/1367493518814926" target="_blank" rel="noreferrer noopener">10.1177/1367493518814926</a>
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2019
Abdel Razeq N M
Developing World 2019 List
End Of Life
Infant
Journal Of Child Health Care
Neonatal
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1207/s15326888chc1803_2" target="_blank" rel="noreferrer">http://doi.org/10.1207/s15326888chc1803_2</a>
Dublin Core
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Title
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Parent and health care provider communication and decision making in the intensive care nursery
Publisher
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Children's Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
1989
Subject
The topic of the resource
Humans; infant; United States; Intensive Care Units; Attitude to Health; Parents; Professional-Family Relations; Communication; Neonatal; Interviews; decision making; Newborn; ICU Decision Making; social support; Best Practices (Davies); Life Support Care/psychology
Creator
An entity primarily responsible for making the resource
Abel-Boone H; Dokecki PR; Smith MS
Description
An account of the resource
This study investigated parents' and health care providers' perspectives of their communicative interactions when a seriously ill infant is treated in an intensive care nursery. Both parents and health care providers stressed the importance of keeping parents informed of their child's condition. Concerns regarding the provision of medical information to parents in an understandable manner, the lack of time health care providers have to spend interacting with parents, and the possibility that parents' emotional involvement interferes with their understanding of the child's condition were raised. Implications for pediatric health care providers relative to their interactions with parents of young chronically ill children are raised.
1989
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1207/s15326888chc1803_2" target="_blank" rel="noreferrer">10.1207/s15326888chc1803_2</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).
Type
The nature or genre of the resource
Journal Article
1989
Abel-Boone H
Attitude To Health
Backlog
Best Practices (Davies)
Children's Health Care
Communication
Decision Making
Dokecki PR
Humans
ICU Decision Making
Infant
Intensive Care Units
Interviews
Journal Article
Life Support Care/psychology
Neonatal
Newborn
Parents
Professional-family Relations
Smith MS
Social Support
United States
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.12968/ijpn.2013.19.10.495" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2013.19.10.495</a>
Dublin Core
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Title
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Parents' perspectives on the deaths of their children in two Brazilian paediatric intensive care units
Publisher
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International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Intensive Care Units; Terminal Care; decision making; Adult; Parents; Attitude of Health Personnel; Attitude to Death; Professional-Family Relations; Communication; Brazil; Pediatric; Preschool; Quality of Health Care
Creator
An entity primarily responsible for making the resource
Abib El Halal Gilda MC; Piva JP; Lago PM; El Halal MGS; Cabral FC; Nilson C; Garcia Pedro CR
Description
An account of the resource
OBJECTIVES: To evaluate the quality of care offered to terminally ill children and their families in the last days of life in two Brazilian Paediatric Intensive Care Units (PICUs) from the parents' perspectives. METHODS: This was a qualitative, exploratory study. Parents of a child who had died in one of the PICUs 6-12 months previously were invited to take part in two interviews: a private meeting with the PICU assistant physician who cared for their child, to discuss and review any outstanding issues related to the diagnosis, treatment, and prognosis, and a recorded interview with a researcher who was not involved in the child's treatment. Data from the interviews with the researcher were posteriorly grouped in categories according to recurrent terms. RESULTS: Six categories emerged, three of which are reported here. The quality of communication was low; the medical staff frequently used technical terms, limiting understanding. Parental participation in the decision-making process was scarce; decisions were based on the medical perspective. Finally, families reported uncompassionate attitudes from the medical staff and excessive technology in the final moments surrounding the child's death, although nurses were highly involved with palliative care measures and demonstrated sympathetic and supportive postures. CONCLUSION: The interviews uncovered deficiencies in the care provided to parents in the PICUs, indicating a need for changes in practice.
2013-10
Identifier
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<a href="http://doi.org/10.12968/ijpn.2013.19.10.495" target="_blank" rel="noreferrer">10.12968/ijpn.2013.19.10.495</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).
Type
The nature or genre of the resource
Journal Article
2013
Abib El Halal Gilda MC
Adult
Attitude Of Health Personnel
Attitude To Death
Backlog
Brazil
Cabral FC
Child
Communication
Decision Making
El Halal MGS
Female
Garcia Pedro CR
Humans
Infant
Intensive Care Units
International Journal of Palliative Nursing
Journal Article
Lago PM
Male
Nilson C
Parents
Pediatric
Piva JP
Preschool
Professional-family Relations
Quality Of Health Care
Terminal Care
-
Dublin Core
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Title
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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
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URL Address
<a href="http://doi.org/10.1007/s11325-010-0432-6" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s11325-010-0432-6</a>
Dublin Core
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Title
A name given to the resource
Respiratory events and obstructive sleep apnea in children with achondroplasia: investigation and treatment outcomes
Publisher
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Sleep and Breathing
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Cross-Sectional Studies; Age Factors; Male; Treatment Outcome; Comorbidity; Child; Humans; Adolescent; Cohort Studies; Female; Child Preschool; Infant; Polysomnography; Body Mass Index; Achondroplasia/di [Diagnosis]; Achondroplasia/th [Therapy]; Sleep Apnea Central/di [Diagnosis]; Sleep Apnea Central/th [Therapy]; Sleep Apnea Obstructive/di [Diagnosis]; Sleep Apnea Obstructive/th [Therapy]; Achondroplasia/ep [Epidemiology]; Airway Obstruction/di [Diagnosis]; Airway Obstruction/ep [Epidemiology]; Airway Obstruction/th [Therapy]; Sleep Apnea Central/ep [Epidemiology]; Sleep Apnea Obstructive/ep [Epidemiology]; breathing difficulties; achondroplasia; trajectory; characteristics; obstructive sleep apnea
Creator
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Afsharpaiman S; Sillence D O; Sheikhvatan M; Ault J E; Waters K
Description
An account of the resource
PURPOSE: We report aspects of sleep-disordered breathing in a cohort of achondroplastic children who attended our hospital. METHODS: A retrospective chart review was conducted for a 15-year period to further evaluate the diagnosis and treatment of sleep-disordered breathing in children with achondroplasia. RESULTS: A review of the medical records was undertaken for 46 children (63%, mean age 3.9 years) with achondroplasia that had overnight polysomnography. Among them, 25 (54.3%) had obstructive sleep apnea (OSA). For 19 out of 46 patients (follow-up rate, 41.3%) with a mean follow-up of 31.3 months (range, 3 month to 11 years), 13 had undergone adenotonsillectomy, while nine were treated with continuous positive airway pressure. CONCLUSIONS: Prospective evaluation of our clinic population confirms a high incidence of SDB in achondroplastic children. OSA has been linked to raise intracranial pressure as well as neurocognitive deficits in children and we hypothesize that associations between neurological and respiratory abnormalities in this disorder are a consequence of the early onset of associated respiratory, rather than the neurological complications.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s11325-010-0432-6" target="_blank" rel="noreferrer noopener">10.1007/s11325-010-0432-6</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).
2011
achondroplasia
Achondroplasia/di [Diagnosis]
Achondroplasia/ep [Epidemiology]
Achondroplasia/th [Therapy]
Adolescent
Afsharpaiman S
Age Factors
Airway Obstruction/di [Diagnosis]
Airway Obstruction/ep [Epidemiology]
Airway Obstruction/th [Therapy]
Ault J E
Body Mass Index
breathing difficulties
characteristics
Child
Child Preschool
Cohort Studies
Comorbidity
Cross-sectional Studies
Female
Humans
Infant
Male
obstructive sleep apnea
Polysomnography
Sheikhvatan M
Sillence D O
Sleep and Breathing
Sleep Apnea Central/di [Diagnosis]
Sleep Apnea Central/ep [Epidemiology]
Sleep Apnea Central/th [Therapy]
Sleep Apnea Obstructive/di [Diagnosis]
Sleep Apnea Obstructive/ep [Epidemiology]
Sleep Apnea Obstructive/th [Therapy]
Trajectory
Treatment Outcome
Waters K
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1136/medethics-2013-101328" target="_blank" rel="noreferrer">http://doi.org/10.1136/medethics-2013-101328</a>
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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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Cultural explanations and clinical ethics: active euthanasia in neonatology
Publisher
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Journal Of Medical Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Female; Humans; infant; Male; Euthanasia; Attitude; Islam; Congenital Abnormalities; Newborn; Active; Students; Hinduism
Creator
An entity primarily responsible for making the resource
Ahmad A
Description
An account of the resource
The authors have undertaken a study to explore the views in non-Western cultures about ending the lives of newborns with genetic defects. This study consists of including active euthanasia alongside withdrawal and withholding of treatment as potential methods used. Apart from radicalising the support for active euthanasia in certain instances of neonatal diagnoses, is another interesting point that views of children and death are shaped by religion and culture and are especially highly charged with culturally specific symbolism/s. Furthermore, this is augmented in the context of non-Western cultures—further polarising the positivist ethics of Western scientific medicine from the cultures that affect only those who are members of ‘other’ societies. From this starting point, the authors shift the focus from clinical explanations of the causation and prognosis of the genetic defects and enter a dialogue with cultural narratives. Consequently, their argument is, broadly, a reassessment of medical practice as a contextualisation of a particular culture/s rather than indifferent or independent from cultural forces or influences.
2014-03
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/medethics-2013-101328" target="_blank" rel="noreferrer">10.1136/medethics-2013-101328</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).
Type
The nature or genre of the resource
Journal Article
2014
Active
Ahmad A
Attitude
Backlog
Congenital Abnormalities
Euthanasia
Female
Hinduism
Humans
Infant
Islam
Journal Article
Journal of Medical Ethics
Male
Newborn
Students
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1097/00005721-200105000-00004" target="_blank" rel="noreferrer">http://doi.org/10.1097/00005721-200105000-00004</a>
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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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"The one thing you can never take away"
Publisher
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The American Journal Of Maternal Child Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Female; Humans; infant; Male; Fetal Death; Grief; Pregnancy; Adult; Newborn; social support; Photography; Maternal-Child Nursing
Creator
An entity primarily responsible for making the resource
Alexander KV
Identifier
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<a href="http://doi.org/10.1097/00005721-200105000-00004" target="_blank" rel="noreferrer">10.1097/00005721-200105000-00004</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
This article describes one nurse's experience resulting from her interest in the value of giving bereavement photographs to parents who experience a perinatal loss. Three families were interviewed about the meaning of those photographs. The parents described deep feelings of the importance of the photographs, which provided the parents with unquestionable proof of their baby's existence. The information discovered through these interviews provides a basic look at how visual memories of the infant can help in the healing process. Nurses are encouraged to standardize and personalize perinatal loss policies and procedures, to incorporate photography into these policies, and to conduct research to evaluate the effectiveness of this intervention.
2001
Adult
Alexander KV
Backlog
Female
Fetal Death
Grief
Humans
Infant
Journal Article
Male
Maternal-Child Nursing
Newborn
Photography
Pregnancy
Social Support
The American Journal Of Maternal Child Nursing
-
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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Oncology
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Citation List Month
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1097/mph.0000000000000523" target="_blank" rel="noreferrer">http://doi.org/10.1097/mph.0000000000000523</a>
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Title
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The Outcome of Critically Ill Pediatric Cancer Patients Admitted to the Pediatric Intensive Care Unit in a Tertiary University Oncology Center in a Developing Country: A 5-Year Experience
Publisher
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Journal Of Pediatric Hematology/oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Developing Countries; Intensive Care Units; Academic Medical Centers; Adolescent; Cancer Care Facilities; Child; Critical Illness; Female; Hematologic Neoplasms/complications/ Mortality/therapy; Humans; Infant; Male; Multiple Organ Failure/etiology; Pediatric; Preschool; Prognosis; Respiratory Insufficiency/etiology; Retrospective Studies; Sepsis/etiology; Tertiary Care Centers; Treatment Outcome
Creator
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Ali AM; Sayed HA; Mohammed MM
Description
An account of the resource
INTRODUCTION: Cancer remains a major cause of death in children, but recent advances in supportive care and progress in the use of chemotherapy have considerably improved the prognosis. The need for intensive care management in pediatric oncology patients is increasing. However, studies demonstrating their outcome in the literature are still deficient, especially in developing countries. Here, we aim to report our experience in managing patients admitted to the pediatric intensive care unit (PICU) at South Egypt Cancer Institute, a tertiary university oncology center in a developing country. PATIENTS AND METHODS: A review of all cancer patients admitted to the PICU at South Egypt Cancer Institute between January 2007 and December 2011 and an evaluation of prognostic factors that may correlate to their short-term outcome were performed. RESULTS: A total of 550 pediatric oncology patients were admitted to the PICU on 757 occasions. Hematological malignancies represented 73.6% of the cases. The median duration of PICU stay was 5 days. Sepsis and respiratory failure were the most frequent indications for PICU admission. The overall survival at the time of discharge from the PICU was 60%. Several factors were found to significantly affect the outcome of patients admitted to the PICU, including the underlying disease, the reason for admission, the intervention used, and the number of failing organs at the time of admission to the PICU. CONCLUSIONS: The prognosis of patients admitted to the PICU in developing countries is still behind those in developed ones. Late referral, especially of patients presenting with respiratory failure, sepsis, and multiorgan failure usually, requires urgent intervention with inotropic support, oxygen therapy, and mechanical ventilation and is significantly associated with poor outcomes, especially in patients with hematological malignancies.
Identifier
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<a href="http://doi.org/10.1097/mph.0000000000000523" target="_blank" rel="noreferrer">10.1097/mph.0000000000000523</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
Academic Medical Centers
Adolescent
Ali AM
Cancer Care Facilities
Child
Critical Illness
Developing Countries
Female
Hematologic Neoplasms/complications/ Mortality/therapy
Humans
Infant
Intensive Care Units
Journal Of Pediatric Hematology/oncology
Male
Mohammed MM
Multiple Organ Failure/etiology
Oncology 2017 List
Pediatric
Preschool
Prognosis
Respiratory Insufficiency/etiology
Retrospective Studies
Sayed HA
Sepsis/etiology
Tertiary Care Centers
Treatment Outcome
-
Dublin Core
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Title
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August 2023 List
Text
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Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1111/nicc.12943" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/nicc.12943</a>
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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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Neonatal organ donation: Retrospective audit into potential donation in a single neonatal unit
Publisher
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Nursing in Critical Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Infant, Newborn; England; article; human; newborn; newborn death; terminal care; documentation; human tissue; newborn intensive care; patient referral; neonatal intensive care unit; surgery; infant; conversation; nurse; cause of death; eligibility; transplantation; brain injury; cooling; organ donor
Creator
An entity primarily responsible for making the resource
Ali F; Chant K; Scales A; Sellwood M; Gallagher K
Description
An account of the resource
Background: Research has shown that many babies who die in neonatal units could have been potential tissue and/or organ donors. Despite the existence of guidelines supporting its implementation, the incidence of neonatal donation remains rare in the United Kingdom. Aim: The aim of this audit was to retrospectively determine potential eligibility for neonatal tissue and/or organ donation referral in infants who died in a single UK tertiary-level neonatal unit between 2012 and 2021. Cause of death and documentation of any discussions held regarding referral for donation were also explored. Study design: An audit was undertaken to identify all neonatal deaths at a single tertiary-level NICU in London from 2012-2021. Infants who retrospectively could have been referred as potential tissue and/or organ donors were identified using current NHS Blood and Transplant inclusion and exclusion criteria. Results and conclusion: A significant missed potential for neonatal tissue and/or organ donation referrals was identified, which is likely not just limited to the unit audited. Causes of death were as expected for a tertiary level neonatal unit and centre for therapeutic cooling of babies born with hypoxic perinatal brain injuries. Only one documented conversation was found regarding neonatal donation. Relevance to clinical practice: To enable conversations regarding neonatal donation to become a routine part of end-of-life care discussions with families as appropriate, good links between neonatal healthcare professionals and Specialist Nurses in Organ Donation need to be established. This will facilitate the referral of all suitable neonates as potential donors and ensure that neonatal staff feel supported to care for babies identified as potential donors.
Identifier
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<a href="http://doi.org/10.1111/nicc.12943" target="_blank" rel="noreferrer noopener">10.1111/nicc.12943</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Ali F
Article
August List 2023
Brain Injury
Cause Of Death
Chant K
Conversation
cooling
Documentation
eligibility
England
Gallagher K
Human
Human Tissue
Infant
Infant, Newborn
Neonatal Intensive Care Unit
Newborn
Newborn Death
Newborn Intensive Care
Nurse
Nursing In Critical Care
organ donor
Patient Referral
Scales A
Sellwood M
Surgery
Terminal Care
Transplantation
-
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 2017 List
URL Address
<a href="https://journals.rcni.com/nursing-children-and-young-people/consistency-in-end-of-life-care-ncyp.28.8.8.s8" target="_blank" rel="noreferrer">https://journals.rcni.com/nursing-children-and-young-people/consistency-in-end-of-life-care-ncyp.28.8.8.s8</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Consistency in end of life care
Publisher
An entity responsible for making the resource available
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
Adolescent; Child; Child Preschool; Communication; Decision Making; Hospice And Palliative Care Nursing/ Standards; Humans; Infant; Nurse-patient Relations; Patient Participation; Pediatric Nursing/ Standards; Practice Guidelines As Topic
Creator
An entity primarily responsible for making the resource
Allen D
Description
An account of the resource
Draft guidelines address regional variations, but there are worries over terminology, the needs of family members and implementation. The death of a child is a comparatively rare event in the UK. Even so, more than 3,000 infant and 2,000 children and young people age 1-19 years died in England and Wales in 2012.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://journals.rcni.com/doi/full/10.7748/ncyp.28.8.8.s8" target="_blank" rel="noreferrer">10.7748/ncyp.28.8.8.s8</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
Adolescent
Allen D
August 2017 List
Child
Child Preschool
Communication
Decision Making
Hospice And Palliative Care Nursing/ Standards
Humans
Infant
Nurse-patient Relations
Nursing Children and Young People
Patient Participation
Pediatric Nursing/ Standards
Practice Guidelines As Topic
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1542/peds.106.2.351" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.106.2.351</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Palliative care for children.
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Child; Humans; United States; Palliative Care; Terminal Care; Pediatrics; Longitudinal Studies; Preschool; Death and Euthanasia; infant; Practice Guidelines
Creator
An entity primarily responsible for making the resource
American Academy of Pediatrics; Committee on Bioethics; American Academy of Pediatrics Committee on Hospital Care
Description
An account of the resource
This statement presents an integrated model for providing palliative care for children living with a life-threatening or terminal condition. Advice on the development of a palliative care plan and on working with parents and children is also provided. Barriers to the provision of effective pediatric palliative care and potential solutions are identified. The American Academy of Pediatrics recommends the development and broad availability of pediatric palliative care services based on child-specific guidelines and standards. Such services will require widely distributed and effective palliative care education of pediatric health care professionals. The Academy offers guidance on responding to requests for hastening death, but does not support the practice of physician-assisted suicide or euthanasia for children.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.106.2.351" target="_blank" rel="noreferrer">10.1542/peds.106.2.351</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2000
American Academy of Pediatrics
American Academy of Pediatrics Committee on Hospital Care
Backlog
Child
Committee on Bioethics
Death and Euthanasia
Humans
Infant
Journal Article
Longitudinal Studies
Palliative Care
Pediatrics
Practice Guidelines
Preschool
Terminal Care
United States