1
40
14
-
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
November 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2019.0207" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2019.0207</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
Virtual Reality: Endless Potential in Pediatric Palliative Care: A Case Report
Publisher
An entity responsible for making the resource available
Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
innovative therapies; pediatric palliative care; symptom management; virtual reality
Creator
An entity primarily responsible for making the resource
Weingarten K; Macapagal F; Parker D
Description
An account of the resource
Pediatric palliative care deals with the physical, psychosocial, and spiritual concerns of patients and their families. And to do this, clinicians must use all the tools at their disposal, including pharmacological and nonpharmacological modalities. Virtual reality is quickly becoming a useful tool in many areas of medicine, including surgical planning, simulation training, rehabilitation, and pain prevention and treatment. Recently it has been used in the adult palliative care population, for symptom management, and memory and legacy creation. We present a case report for, what we believe to be, the first time in the pediatric palliative care population.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2019.0207" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0207</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
innovative therapies
Journal of Palliative Medicine
Macapagal F
November 2019 List
Parker D
Pediatric Palliative Care
Symptom Management
virtual reality
Weingarten K
-
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
November 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2019 List
URL Address
<a href="http://doi.org/10.1111/apa.14203" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.14203</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
Paediatricians' expectations and perspectives regarding genetic testing for children with developmental disorders
Publisher
An entity responsible for making the resource available
Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Array comparative genomic hybridisation; Attitude of Health Personnel; Autism spectrum disorder; Chromosomal microarray; Developmental disorders; Genetic Testing; Global developmental delay; Autism Spectrum Disorder/genetics; Child; Developmental Disabilities/genetics; Humans; Microarray Analysis; Pediatricians/psychology
Creator
An entity primarily responsible for making the resource
Tremblay I; Laberge AM; Cousineau D; Carmant L; Rowan A; Janvier A
Description
An account of the resource
AIM: To investigate paediatricians' expectations and perspectives of genetic testing for children with developmental disorders. METHODS: Paediatricians working in a developmental clinic were surveyed each time they ordered a chromosomal microarray (CMA) for a child with developmental disorders. Clinical charts were reviewed. Results were analysed using mixed methodology. RESULTS: Ninety-seven % (73/76) of surveys were completed. Paediatricians reported that 36% of parents had difficulties understanding genetic testing and that 40% seemed anxious. The majority expected testing to have positive impacts on children/families. The themes raised were (i) clarifying the diagnosis (56%), (ii) understanding the aetiology of the condition (55%), (iii) enabling prenatal diagnosis/counselling (43%), (iv) improving medical care for the child (15%) and (v) decreasing parental guilt/anxiety (8%). Less than half anticipated negative impacts; 74% expected that the most helpful result for their patient would be an abnormal result explaining the disorder. Among the 73 children for whom CMA was ordered, 81% got tested: 66% of the results were normal, 19% were abnormal and contributed to explain the condition and 12% were abnormal but of unknown significance. CONCLUSION: Paediatricians generally expect many positive and less negative impacts of genetic testing for children with developmental disorders. Parental perspectives are needed.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/apa.14203" target="_blank" rel="noreferrer noopener">10.1111/apa.14203</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).
2018
Acta Paediatrica
Array comparative genomic hybridisation
Attitude Of Health Personnel
Autism spectrum disorder
Autism Spectrum Disorder/genetics
Carmant L
Child
Chromosomal microarray
Cousineau D
Developmental Disabilities/genetics
Developmental disorders
Genetic Testing
Global developmental delay
Humans
Janvier A
Laberge AM
Microarray Analysis
November 2019 List
Pediatricians/psychology
Rowan A
Tremblay I
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
November 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2019 List
URL Address
<a href="http://doi.org/10.7748/ncyp.2019.e1199" target="_blank" rel="noreferrer noopener">http://doi.org/10.7748/ncyp.2019.e1199</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
Approaches to community-based palliative care provision by children's hospices in the UK
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
2019
Subject
The topic of the resource
advance care planning; child health; palliative nursing; article; child; controlled study; female; human; human experiment; Internet; major clinical study; male; out-of-hours care; prescription; questionnaire; registered nurse; telephone; workforce
Creator
An entity primarily responsible for making the resource
Tatterton MJ
Description
An account of the resource
The number of children in the UK with life-limiting conditions and the demand for home-based palliative care is increasing. Children's hospices remain a dominant provider of palliative care. This study aimed to determine the approaches taken by children's hospices across the UK in meeting the planned and unplanned health needs of children and their families who receive palliative care at home. In addition, the survey aimed to identify the professional composition of community teams and the number of children and families supported by each service. An internet-based questionnaire survey was sent to all children's hospices in the UK, comprising ten questions exploring the size of the team, geographical areas covered, workforce composition, services offered and approaches to managing unplanned, out of hours care. Responses were received from 14 (26%) of the hospices. A total of 1,618 children and their families were being cared for by these hospices, of whom 825 received care at home. Registered nurses constituted the greatest proportion of staff and were employed by all teams. Care provided at home was broadly split into two categories: planned short breaks and responsive palliative nursing. The latter comprised advance care planning, anticipatory prescribing and active symptom control. Out of hours care was usually offered in the form of telephone support. Models of community-based care are evolving to include nurses practising at specialist and advanced levels, allowing more children with increasingly complex conditions to be cared for at home.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.7748/ncyp.2019.e1199" target="_blank" rel="noreferrer noopener">10.7748/ncyp.2019.e1199</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Advance Care Planning
Article
Child
Child Health
Controlled Study
Female
Human
Human Experiment
Internet
Major Clinical Study
Male
November 2019 List
Nursing children and young people.
out-of-hours care
palliative nursing
prescription
Questionnaire
registered nurse
Tatterton MJ
Telephone
workforce
-
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
November 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
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>
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
Parental assessment of comfort in newborns affected by life-limiting conditions treated by a standardized neonatal comfort care program
Publisher
An entity responsible for making the resource available
Journal of Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Palliative Care/mt [Methods]; Parents/px [Psychology]; Patient Comfort/st [Standards]; Adult; Female; Humans; Infant; Intensive Care; Male; Neonatal/og [Organization & Administration]; New York; Newborn; Patient Care Team/og [Organization & Administration]; Practice Guidelines as Topic; Prospective Studies; Qualitative Research; Surveys and Questionnaires; Young Adult
Creator
An entity primarily responsible for making the resource
Parravicini E; Daho M; Foe G; Steinwurtzel R; Byrne M
Description
An account of the resource
OBJECTIVE: To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program. STUDY DESIGN: Participants were parents (n=35 families) who elected comfort care for their newborns diagnosed with life-limiting conditions. Standardized comfort measures including family/infant bonding, warmth, nutrition/hydration and pain/discomfort management were provided to all infants. Parents consented to receive a questionnaire with quantitative response options and open-ended questions. RESULTS: Forty-two questionnaires (26 from mothers and 16 from fathers) were collected and analyzed. Most parents reported that their child was treated with respect, in a caring, peaceful and non-invasive environment. To the question 'Do you think that overall your baby received comfort' mode response was 'always'. CONCLUSION: Parents of infants with life-limiting conditions perceive that their babies experience comfort as a result of the care provided by the standardized Neonatal Comfort Care Program.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1038/jp.2017.160" target="_blank" rel="noreferrer noopener">10.1038/jp.2017.160</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).
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
-
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
November 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2019 List
URL Address
<a href="http://doi.org/10.1177/0269216319870647" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319870647</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
Achieving beneficial outcomes for children with life-limiting and life-threatening conditions receiving palliative care and their families: A realist review
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
child; healthcare facilities; manpower and services; palliative care; realist review; terminal care
Creator
An entity primarily responsible for making the resource
Mitchell S; Bennett K; Morris A; Slowther A; Coad J; Dale J
Description
An account of the resource
Background:Palliative care for children and young people is a growing global health concern with significant resource implications. Improved understanding of how palliative care provides benefits is necessary as the number of children with life-limiting and life-threatening conditions rises.Aim:The aim is to investigate beneficial outcomes in palliative care from the perspective of children and families and the contexts and hidden mechanisms through which these outcomes can be achieved.Design:This is a systematic realist review following the RAMESES standards. A protocol has been published in PROSPERO (registration no: CRD42018090646).Data sources:An iterative literature search was conducted over 2?years (2015?2017). Empirical research and systematic reviews about the experiences of children and families in relation to palliative care were included.Results:Sixty papers were included. Narrative synthesis and realist analysis led to the proposal of context?mechanism?outcome configurations in four conceptual areas: (1) family adaptation, (2) the child?s situation, (3) relationships with healthcare professionals and (4) access to palliative care services. The presence of two interdependent contexts, the ?expert? child and family and established relationships with healthcare professionals, triggers mechanisms, including advocacy and affirmation in decision-making, which lead to important outcomes including an ability to place the emphasis of care on lessening suffering. Important child and family outcomes underpin the delivery of palliative care.Conclusion:Palliative care is a complex, multifactorial intervention. This review provides in-depth understanding into important contexts in which child and family outcomes can be achieved so that they benefit from palliative care and should inform future service development and practice.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216319870647" target="_blank" rel="noreferrer noopener">10.1177/0269216319870647</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Bennett K
Child
Coad J
Dale J
healthcare facilities
manpower and services
Mitchell S
Morris A
November 2019 List
Palliative Care
Palliative Medicine
realist review
Slowther A
Terminal Care
-
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
November 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2019 List
URL Address
<a href="http://doi.org/10.1016/j.midw.2019.102531" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.midw.2019.102531</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
New understandings of fathers' experiences of grief and loss following stillbirth and neonatal death: A scoping review
Publisher
An entity responsible for making the resource available
Midwifery
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Fathers; Grief; Loss; Neonatal death; Stillbirth
Creator
An entity primarily responsible for making the resource
Jones K; Robb M; Murphy S; Davies A
Description
An account of the resource
OBJECTIVE: To report on research conducted on men's experiences of grief and loss following stillbirth and neonatal death in high-income, Western countries. DESIGN: This review was guided by the following research questions: 1. The impact of perinatal death for men 2. The meaning of the loss for a father's sense of identity 3. The extent to which men were able to express grief while supporting their partners and, 4. how men's experience of grief was mediated by the support and care received by health professionals. DATA SOURCES: We searched the following databases: Medline; PsychINFO; CINAHL to identify relevant articles published from the year 2000 onwards. The searches were run between 1/04/2018 and 8/4/2018. REVIEW METHODS: A scoping review was conducted of nursing, psychological, medical and social science databases using these key words: fathers' grief, men's grief, perinatal loss and death, stillbirth and neonatal death. RESULTS: Studies indicated that men reported less intense and enduring levels of psychological outcomes than women but were more likely to engage in avoidance and coping behaviours such as increased alcohol consumption. Men felt that their role was primarily as a 'supportive partner' and that they were overlooked by health professionals. CONCLUSIONS: Further research is needed on men's experience of grief following perinatal death, especially on their physical and mental well-being. IMPACT: This review addressed the problem of the lack of knowledge around paternal needs following perinatal death and highlighted areas which researchers could usefully investigate with the eventual aim of improving care for fathers.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.midw.2019.102531" target="_blank" rel="noreferrer noopener">10.1016/j.midw.2019.102531</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Davies A
Fathers
Grief
Jones K
Loss
Midwifery
Murphy S
Neonatal Death
November 2019 List
Robb M
Stillbirth
-
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
November 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2019 List
URL Address
<a href="http://doi.org/10.1111/dmcn.14045" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.14045</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
Reliability and predictive validity of the Standardized Infant NeuroDevelopmental Assessment neurological scale
Publisher
An entity responsible for making the resource available
Developmental Medicine and Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Severity of Illness Index; Diagnostic Techniques; Female; Humans; Infant; Longitudinal Studies; Male; Neurodevelopmental Disorders/diagnosis; Neurological/standards; Reproducibility of Results
Creator
An entity primarily responsible for making the resource
Hadders-Algra M; Tacke U; Pietz J; Rupp A; Philippi H
Description
An account of the resource
AIM: To assess reliability and predictive validity of the neurological scale of the Standardized Infant NeuroDevelopmental Assessment (SINDA), a recently developed assessment for infants aged 6 weeks to 12 months. METHOD: To assess reliability, three assessors independently rated video-recorded neurological assessments of 24 infants twice. Item difficulty and discrimination were determined. To evaluate predictive validity, 181 infants (median gestational age 30wks [range 22-41wks]; 92 males, 89 females) attending a non-academic outpatient clinic were assessed with SINDA's neurological scale (28 dichotomized items). Atypical neurodevelopmental outcome at 24 months or older corrected age implied a Bayley Mental Developmental Index or Psychomotor Developmental Index lower than 70 or a diagnosis of cerebral palsy (CP). Predictive values were calculated from SINDA (2-12mo corrected age, median 3mo) and typical versus atypical outcome. RESULTS: Intraclass correlation coefficients of intrarater and interrater agreement of the neurological score varied between 0.923 and 0.965. Item difficulty and discrimination were satisfactory. At 24 months or older, 56 children (31%) had an atypical outcome (29 had CP). Atypical neurological scores (below 25th centile,
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/dmcn.14045" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14045</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Developmental Medicine and Child Neurology
Diagnostic Techniques
Female
Hadders-Algra M
Humans
Infant
Longitudinal Studies
Male
Neurodevelopmental Disorders/diagnosis
Neurological/standards
November 2019 List
Philippi H
Pietz J
Reproducibility of Results
Rupp A
Severity Of Illness Index
Tacke U
-
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
November 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2019 List
URL Address
<a target="_blank" class="vk-MessageLink sc-dtPURA gCihbf" href="http://ow.ly/Pw4Y50wM6Z9" rel="noreferrer noopener">http://ow.ly/Pw4Y50wM6Z9</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
Epidemiologic Trends of Adoption of Do-Not-Resuscitate Status After Pediatric In-Hospital Cardiac Arrest
Publisher
An entity responsible for making the resource available
Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
cardiac arrest; children; do-not-resuscitate; epidemiologic trends; mortality
Creator
An entity primarily responsible for making the resource
Gupta P; Rettiganti M; Gossett JM; Nadkarni VM; Berg RA; Raymond TT; Parshuram CS
Description
An account of the resource
Objectives: To evaluate the prevalence of do-not-resuscitate status, assess the epidemiologic trends of do-not-resuscitate status, and assess the factors associated with do-not-resuscitate status in children after in-hospital cardiac arrest using large, multi-institutional data.Design: Generalized estimating equations logistic regression model was used to evaluate the trends of do-not-resuscitate status and evaluate the factors associated with do-not-resuscitate status after cardiac arrest.Setting: American Heart Association's Get With the Guidelines-Resuscitation Registry.Patients: Children (< 18 yr old) with an index in-hospital cardiac arrest and greater than or equal to 1 minute of documented chest compressions were included (2006-2015). Patients with no return of spontaneous circulation after cardiac arrest were excluded.Interventions: None.Measurements and Main Results: In total, 8,062 patients qualified for inclusion. Of these, 1,160 patients (14.4%) adopted do-not-resuscitate status after cardiac arrest. We found low rates of survival to hospital discharge among children with do-not-resuscitate status (do-not-resuscitate vs no do-not-resuscitate: 6.0% vs 69.7%). Our study found that rates of do-not-resuscitate status after cardiac arrest are highest in children with Hispanic ethnicity (16.4%), white race (15.0%), and treatment at institutions with larger PICUs (> 50 PICU beds: 17.8%) and at institutions located in North Central (17.6%) and South Atlantic/Puerto Rico (17.1%) regions of the United States. Do-not-resuscitate status was more common among patients with more preexisting conditions, longer duration of cardiac arrest, greater than 1 cardiac arrest, and among patients requiring extracorporeal cardiopulmonary resuscitation. We also found that trends of do-not-resuscitate status after cardiac arrest in children are decreasing in recent years (2013-2015: 13.8%), compared with previous years (2006-2009: 16.0%).Conclusions: Patient-, hospital-, and regional-level factors are associated with do-not-resuscitate status after pediatric cardiac arrest. As cardiac arrest might be a signal of terminal chronic illness, a timely discussion of do-not-resuscitate status after cardiac arrest might help families prioritize quality of end-of-life care.
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Berg RA
Cardiac Arrest
Children
do-not-resuscitate
epidemiologic trends
Gossett JM
Gupta P
Mortality
Nadkarni VM
November 2019 List
Parshuram CS
Pediatric Critical Care Medicine
Raymond TT
Rettiganti M
-
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
November 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2019 List
URL Address
<a target="_blank" class="vk-MessageLink sc-dtPURA gCihbf" href="http://ow.ly/I0mW50wM6R6" rel="noreferrer noopener">http://ow.ly/I0mW50wM6R6</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
Improving Pediatric Palliative Care communication with Primary Care Providers: Development and implementation of a discharge letter writing system and palliative care plan
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
communication; healthcare professionals; pediatric palliative care
Creator
An entity primarily responsible for making the resource
Ernst KF; Humphrey L; Rossfeld Z
Description
An account of the resource
Introduction: Pediatric palliative care (PPC) seeks longitudinal relationships with patients facing life threatening conditions. Optimal PPC navigates between both inpatient and outpatient domains thus making the patient’s primary care physician (PCP) an integral member of the PPC care team. However, PPC to PCP communication is often lacking. This project sought to improve the communication between PPC teams and primary …
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Communication
Ernst KF
Healthcare Professionals
Humphrey L
November 2019 List
Pediatric Palliative Care
Pediatrics
Rossfeld Z
-
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
November 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2019 List
URL Address
<a href="http://doi.org/10.1111/dmcn.14154" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.14154</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
Functional Evaluation of Eating Difficulties Scale to predict oral motor skills in infants with neurodevelopmental disorders: a longitudinal study
Publisher
An entity responsible for making the resource available
Developmental Medicine & Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
eating difficulties; functional evaluation; infants; longitudinal study; neurodevelopmental disabilities; neurodevelopmental disorders; neurodevelopmental impairment; oral motor skills
Creator
An entity primarily responsible for making the resource
Cavallini A; Provenzi L; Minico GSD; Sacchi D; Gavazzi L; Amorelli V; Borgatti R
Description
An account of the resource
Aim To assess the predictive validity of the Functional Evaluation of Eating Difficulties Scale (FEEDS) on long-term eating developmental outcomes in infants with neurodevelopmental disorders. Method In total, 144 infants (69 females, 75 males) aged 0 to 12 months (mean [SD] 5.34mo [3.42]) with neurodevelopmental disorders and requiring enteral nutrition support, hospitalized between January 2004 and December 2017, were included. The FEEDS was administered at the onset of hospitalization. Follow-up evaluations of feeding modalities occurred at discharge and at 6 months, 12 months, and 24 months after discharge. FEEDS score was tested as a predictor of infants’ feeding modality (percutaneous endoscopic gastrostomy, nasogastric tube, mixed, oral feeding) and time to autonomous oral feeding. Percentages of false-positive and negative cases were checked. Results Lower FEEDS scores significantly predicted infants’ feeding modality (0.40≤R2≤0.61). A 1-point increase in FEEDS score was associated with increased risk (6%–14%; p<0.05) of being non-autonomous feeders at the different follow-up points in infants who had a FEEDS score above the clinical cut-off. Interpretation The FEEDS appears to be a clinically valid assessment to predict the presence of eating difficulties in infants with neurodevelopmental disabilities. What this paper adds Functional Evaluation of Eating Difficulties Scale (FEEDS) significantly predicted eating difficulties in infants with neurodevelopmental disabilities. Lower FEEDS score is significantly associated with autonomous feeding at the 24-month follow-up. FEEDS cut-off identified infants at low-risk and high-risk for eating disorder.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/dmcn.14154" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14154</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Amorelli V
Borgatti R
Cavallini A
Developmental Medicine & Child Neurology
eating difficulties
functional evaluation
Gavazzi L
Infants
longitudinal study
Minico GSD
neurodevelopmental disabilities
neurodevelopmental disorders
neurodevelopmental impairment
November 2019 List
oral motor skills
Provenzi L
Sacchi D
-
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
November 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2019 List
URL Address
<a href="http://doi.org/10.1038/s41372-019-0490-y" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41372-019-0490-y</a>
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
Early palliative care reduces stress in parents of neonates with congenital heart disease: validation of the "Baby, Attachment, Comfort Interventions"
Publisher
An entity responsible for making the resource available
Journal of perinatology : official journal of the California Perinatal Association.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
comfort; congenital heart disease; mental stress; palliative therapy; anxiety; article; child parent relation; cohort analysis; controlled study; emotional attachment; female; health care quality; human; infant; male; newborn; prospective study
Creator
An entity primarily responsible for making the resource
Callahan K; Steinwurtzel R; Brumarie L; Schechter S; Parravicini E
Description
An account of the resource
OBJECTIVE: To test our hypothesis that an innovative method of early palliative care called "Baby, Attachment, Comfort Interventions" reduces psychological distress in parents of neonates with congenital heart disease. STUDY DESIGN: Prospective cohort study of parents of neonates with congenital heart disease. Distress was evaluated at admission and discharge using Neonatal Unit Parental Stressor Scale and Depression Anxiety Stress Index-21. Control parents received standard of care. Intervention parents received interdisciplinary interventions aimed at improving neonatal comfort and parenting experience.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1038/s41372-019-0490-y" target="_blank" rel="noreferrer noopener">10.1038/s41372-019-0490-y</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
anxiety
Article
Brumarie L
Callahan K
Child Parent Relation
Cohort Analysis
Comfort
Congenital Heart Disease
Controlled Study
emotional attachment
Female
Health Care Quality
Human
Infant
Journal of perinatology : official journal of the California Perinatal Association.
Male
Mental Stress
Newborn
November 2019 List
Palliative Therapy
Parravicini E
Prospective Study
Schechter S
Steinwurtzel R
-
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
November 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2019 List
URL Address
<a target="_blank" class="vk-MessageLink sc-hxTMRp fGfItZ" href="http://ow.ly/t9Os50wM6GL" rel="noreferrer noopener">http://ow.ly/t9Os50wM6GL</a> <span></span>
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
Do-Not-Resuscitate Orders in the Neonatal ICU: Experiences and Beliefs Among Staff
Publisher
An entity responsible for making the resource available
Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Attitude of Health Personnel; Attitudes; Female; Health Knowledge; Hospital/psychology; Humans; Intensive Care Units; Male; Medical Staff; Neonatal/statistics & numerical data; Nursing Staff; Practice; Professional-Family Relations; Resuscitation Orders/psychology; Retrospective Studies; Surveys and Questionnaires; United States; Withholding Treatment/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Arzuaga BH; Wraight CL; Cummings CL; Mao W; Miedema D; Brodsky DD
Description
An account of the resource
OBJECTIVES: Studies in adult patients have shown that do-not-resuscitate orders are often associated with decreased medical intervention. In neonatology, this phenomenon has not been investigated, and how do-not-resuscitate orders potentially affect clinical care is unknown. DESIGN: Retrospective medical record data review and staff survey responses about neonatal ICU do-not-resuscitate orders. SETTING: Four academic neonatal ICUs. SUBJECTS: Clinical staff members working in each neonatal ICU. INTERVENTIONS: Survey response collection and analysis. MEASUREMENTS AND MAIN RESULTS: Participating neonatal ICUs had 14-48 beds and 120-870 admissions/yr. Frequency range of do-not-resuscitate orders was 3-11 per year. Two-hundred fifty-seven surveys were completed (46% response). Fifty-nine percent of respondents were nurses; 20% were physicians. Over the 5-year period, 44% and 17% had discussed a do-not-resuscitate order one to five times and greater than or equal to 6 times, respectively. Fifty-seven percent and 22% had cared for one to five and greater than or equal to 6 patients with do-not-resuscitate orders, respectively. Neonatologists, trainees, and nurse practitioners were more likely to report receiving training in discussing do-not-resuscitate orders or caring for such patients compared with registered nurses and respiratory therapists (p < 0.001). Forty-one percent of respondents reported caring for an infant in whom interventions had been withheld after a do-not-resuscitate order had been placed without discussing the specific withholding with the family. Twenty-seven percent had taken care of an infant in whom interventions had been withdrawn under the same circumstances. Participants with previous experiences withholding or withdrawing interventions were more likely to agree that these actions are appropriate (p < 0.001). CONCLUSIONS: Most neonatal ICU staff report experience with do-not-resuscitate orders; however, many, particularly nurses and respiratory therapists, report no training in this area. Variable beliefs with respect to withholding and withdrawing care for patients with do-not-resuscitate orders exist among staff. Because neonatal ICU patients with do-not-resuscitate orders may ultimately survive, withholding or withdrawing interventions may have long-lasting effects, which may or may not coincide with familial intentions.
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).
2018
Arzuaga BH
Attitude Of Health Personnel
Attitudes
Brodsky DD
Cummings CL
Female
Health Knowledge
Hospital/psychology
Humans
Intensive Care Units
Male
Mao W
Medical Staff
Miedema D
Neonatal/statistics & Numerical Data
November 2019 List
Nursing Staff
Pediatric Critical Care Medicine
Practice
Professional-family Relations
Resuscitation Orders/psychology
Retrospective Studies
Surveys And Questionnaires
United States
Withholding Treatment/statistics & Numerical Data
Wraight CL
-
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
November 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2019 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2019-001881" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2019-001881</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
Perinatal hypoxic-ischaemic encephalopathy: a national survey of end-of-life decisions and palliative care
Publisher
An entity responsible for making the resource available
BMJ supportive & palliative 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
decision making; hypothermia; hypoxic ischemic encephalopathy; palliative therapy; article; consensus; controlled study; gestational age; grief; human; interview; nervous system; newborn; nurse; prognosis
Creator
An entity primarily responsible for making the resource
Arnaez J; Herranz-Rubia N; Garcia-Alix A
Description
An account of the resource
Objective To explore end-of-life (EoL) decision-making and palliative care in hypoxic-ischaemic encephalopathy (HIE) nationwide. Methods A cross-sectional national study on moderate-to-severe HIE in newborns ≥35 weeks’ gestational age in 2015, including all 57 level III units that offered hypothermia. Forty-one questions were included to explore how the prognosis is established, as well as timing of the decision-making process, and also how ongoing palliative care is offered. Results The main difficulties in EoL decisions lie in the scarce time to make an early, accurate prognosis. Only 20% shared the neurological prognosis with the parents within 72 hours of life, and in only a third of the centres is the nurse present when the prognostic information is given to the family. Almost 50% do not use protocols to order the EoL process. Practically, all centres (91%) reported taking into account the wishes of the parents. However, in 30% the team does not always reach consensus on how the withdrawal process. Specialised psychological support is available in 54% of the hospitals; in more than 50%, interviews are not arranged to examine the grieving process with parents. Conclusions There are four areas for improvement in the comprehensive, multidisciplinary approach to the EoL decision in the patient with HIE: (1) the need for EoL and interdisciplinary palliative care protocols, (2) participation of nurses in the process and improvement in the nurse–physician communication, (3) psychological support for parents involved in the EoL decisions and (4) implementation of strategies to give support during the grieving process.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjspcare-2019-001881" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-001881</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Arnaez J
Article
BMJ supportive & palliative care.
Consensus
Controlled Study
Decision Making
Garcia-Alix A
Gestational Age
Grief
Herranz-Rubia N
Human
hypothermia
hypoxic ischemic encephalopathy
Interview
Nervous System
Newborn
November 2019 List
Nurse
Palliative Therapy
Prognosis
-
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
November 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jped.2019.07.005" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jped.2019.07.005</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 extubation: five-year experience in a pediatric hospital
Publisher
An entity responsible for making the resource available
Jornal de Pediatria
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Children; Criancas; Cuidados no fim da vida; Cuidados paliativos; End-of-life care; Ethics; Etica; Extubacao paliativa; Palliative care; Palliative extubation; Suspensao de tratamento; Withdrawal treatment
Creator
An entity primarily responsible for making the resource
Affonseca CA; Carvalho LFA; Quinet RPB; Guimaraes MCDC; Cury VF; Rotta AT
Description
An account of the resource
OBJECTIVE: To present the characteristics of pediatric patients with chronic and irreversible diseases who underwent palliative extubation. METHOD: This is a descriptive analysis of a case series of patients admitted to a public pediatric hospital, with chronic and irreversible diseases, permanently dependent on ventilatory support, who underwent palliative extubation between April 2014 and May 2019. The following information was collected from the medical records: demographic data, diagnosis, duration and type of mechanical ventilation; date, time, and place of palliative extubation; medications used; symptoms observed; and hospital outcome. RESULTS: A total of 19 patients with a mean age of 2.2 years underwent palliative extubation. 68.4% of extubations were performed in the ICU; 11 patients (57.9%) died in the hospital. The time between mechanical ventilation withdrawal and in-hospital death ranged from 15min to five days. Thirteen patients had an orotracheal tube and the others a tracheostomy. The main symptoms were dyspnea and pain, and the main drugs used to control symptoms were opioids and benzodiazepines. CONCLUSIONS: It was not possible to identify predictors of in-hospital death after ventilatory support withdrawal. Palliative extubation requires specialized care, with the presence and availability of a multidisciplinary team with adequate training in symptom control and palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jped.2019.07.005" target="_blank" rel="noreferrer noopener">10.1016/j.jped.2019.07.005</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Affonseca CA
Carvalho LFA
Children
Criancas
Cuidados no fim da vida
Cuidados paliativos
Cury VF
End-of-life Care
Ethics
Etica
Extubacao paliativa
Guimaraes MCDC
Jornal De Pediatria
November 2019 List
Palliative Care
Palliative Extubation
Quinet RPB
Rotta AT
Suspensao de tratamento
Withdrawal treatment