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40
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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/10.1111/apa.14797" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.14797</a>
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Title
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Neonatologists and neonatal nurses have positive attitudes towards perinatal end-of-life decisions, a nationwide survey
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Acta Paediatrica
Date
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2020
Subject
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Surveys and Questionnaires; Newborn Infant; Pregnancy; Attitude of Health Personnel; Decision Making; Belgium; Terminal Care; Perinatal death; End-of-life decisions; Death; Termination of pregnancy; Neonatologists; Optimism; Attitude questionnaire; Attitudes of neonatologists and neonatal nurses; Neonatal Nurses
Creator
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Dombrecht L; Deliens L; Chambaere K; Baes S; Cools F; Goossens L; Naulaers G; Roets E; Piette V; Cohen J; Beernaert K
Description
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AIM: Perinatal death is often preceded by an end-of-life decision (ELD). Disparate hospital policies, complex legal frameworks and ethically difficult cases make attitudes important. This study investigated attitudes of neonatologists and nurses towards perinatal ELDs. METHODS: A survey was handed out to all neonatologists and neonatal nurses in all eight neonatal intensive care units in Flanders, Belgium in May 2017. Respondents indicated agreement with statements regarding perinatal ELDs on a Likert-scale and sent back questionnaires via mail. RESULTS: The response rate was 49.5% (302/610). Most neonatologists and nurses found nontreatment decisions such as withholding or withdrawing treatment acceptable (90-100%). Termination of pregnancy when the foetus is viable in cases of severe or lethal foetal problems was considered highly acceptable in both groups (80-98%). Physicians and nurses do not find different ELDs equally acceptable, e.g. nurses more often than physicians (74% vs 60%, p = 0.017) agree that it is acceptable in certain cases to administer medication with the explicit intention of hastening death. CONCLUSION: There was considerable support for both prenatal and neonatal ELDs, even for decisions that currently fall outside the Belgian legal framework. Differences between neonatologists' and nurses' attitudes indicate that both opinions should be heard during ELD-making.
Identifier
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<a href="http://doi.org/10.1111/apa.14797" target="_blank" rel="noreferrer noopener">10.1111/apa.14797</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
Acta Paediatrica
Attitude Of Health Personnel
Attitude questionnaire
Attitudes of neonatologists and neonatal nurses
Baes S
Beernaert K
Belgium
Chambaere K
Cohen J
Cools F
Death
Decision Making
Deliens L
Dombrecht L
End-of-life Decisions
Goossens L
July 2021 List
Naulaers G
Neonatal Nurses
Neonatologists
Newborn Infant
Optimism
Perinatal Death
Piette V
Pregnancy
Roets E
Surveys And Questionnaires
Terminal Care
Termination of pregnancy
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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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December 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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December 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2021.09.062" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpeds.2021.09.062</a>
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Title
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Face-Validated Quality Indicators for Appropriateness Of End-Of-Life Care in Children With Serious Illness: A Study Using the RAND/UCLA Appropriateness Method
Publisher
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The Journal of Pediatrics
Date
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2021
Subject
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End-of-life care; pediatric palliative care; pediatrics; quality indicators; quality of life
Creator
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Piette V; Deliens L; van der Werff Ten Bosch J; Beernaert K; Cohen J
Description
An account of the resource
OBJECTIVE: To develop and face-validate population-level indicators for potential appropriateness of end-of-life care, for children with cancer, neurological conditions, and genetic/congenital conditions, to be applied to administrative health data containing medication and treatment variables. STUDY DESIGN: Modified RAND/University of California at Los Angeles (RAND/UCLA) appropriateness method. We identified potential indicators per illness group through systematic literature review, scoping review, and expert interviews. Three unique expert panels, a cancer (n=19), neurology (n=21), and genetic/congenital (n=17) panel, participated in interviews and rated indicators in individual ratings, group discussions, and second individual ratings. Each indicator was rated on a scale from 1 to 9 for suitability. Consensus was calculated with Interpercentile Range Adjusted for Symmetry formula. Indicators with consensus about unsuitability were removed, those with consensus about suitability were retained, those with lack of consensus deliberated in the group discussion. Experts included pediatricians, nurses, psychologists, physiotherapists, pharmacologists, care coordinators, general practitioners, social workers from hospitals, care teams, and general practice. RESULTS: Literature review and expert interviews yielded 115 potential indicators for cancer, 111 for neurological conditions, and 99 for genetic/congenital conditions. We combined similar indicators, resulting in respectively 36, 32, and 33 indicators per group. Expert scoring approved 21 indicators for cancer, 24 for neurological conditions, and 23 for genetic/congenital conditions. CONCLUSIONS: Our indicators can be applied to administrative data to evaluate appropriateness of children's end-of-life care. Differences from adults' indicators stress the specificity of children's end-of-life care. Individual care and remaining aspects, such as family support, can be evaluated with complementary tools.
Identifier
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<a href="http://doi.org/10.1016/j.jpeds.2021.09.062" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2021.09.062</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
Beernaert K
Cohen J
December 2021 List
Deliens L
End-of-life Care
Pediatric Palliative Care
Pediatrics
Piette V
Quality Indicators
Quality Of Life
The Journal Of Pediatrics
van der Werff Ten Bosch J
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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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August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1007/s00431-023-05030-z" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00431-023-05030-z</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
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Appropriateness of end-of-life care for children with genetic and congenital conditions: a cohort study using routinely collected linked data
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
2023
Subject
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child; Cohort Studies; Belgium; Terminal Care; terminal care; article; female; human; major clinical study; male; palliative therapy; pediatrics; cohort analysis; physician; nuclear magnetic resonance imaging; health care system; general practitioner; decision making; bereavement; computer assisted tomography; congenital disorder; drawing; administrative health data; genetic association; genetic disorder; empirical research; paramedical personnel; X ray
Creator
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Piette V; Deliens L; Debulpaep S; Cohen J; Beernaert K
Description
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Abstract This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing children (1-17) who died with genetic and congenital conditions in Belgium between 2010 and 2017. We measured 22 quality indicators, face-validated using a previously published RAND/UCLA methodology. Appropriateness of care was defined as the overall "expected health benefit" of given healthcare interventions within a healthcare system exceeding expected negative outcomes. In the 8-year study period, 200 children were identified to have died with genetic and congenital conditions. Concerning appropriateness of care, in the last month before death, 79% of children had contact with specialist physicians, 17% had contact with a family physician, and 5% received multidisciplinary care. Palliative care was used by 17% of the children. Concerning inappropriateness of care, 51% of the children received blood drawings in the last week before death, and 29% received diagnostics and monitoring (2 or more magnetic resonance imaging scans, computed tomography scans, or X-rays) in the last month. Conclusion: Findings suggest end-of-life care could be improved in terms of palliative care, contact with a family physician and paramedics, and diagnostics and monitoring in the form of imaging. What is Known: • Previous studies suggest that end-of life care for children with genetic and congenital conditions may be subject to issues with bereavement, psychological concerns for child and family, financial cost at the end of life, decision-making when using technological interventions, availability and coordination of services, and palliative care provision. Bereaved parents of children with genetic and congenital conditions have previously evaluated end-of-life care as poor or fair, and some have reported that their children suffered a lot to a great deal at the end of life. • However, no peer-reviewed population-level quality evaluation of end-of-life care for this population is currently present. What is New: • This study provides an evaluation of the appropriateness of end-of-life care for children who died in Belgium with genetic and congenital conditions between 2010 and 2017, using administrative healthcare data and validated quality indicators. The concept of appropriateness is denoted as relative and indicative within the study, not as a definitive judgement. • Our study suggests improvements in end-of-life care may be possible, for instance, in terms of the provision of palliative care, contact with care providers next to the specialist physician, and diagnostics and monitoring in terms of imaging (e.g., magnetic resonance imaging, computed tomography scans). Further empirical research is necessary, for instance, into unforeseen and foreseen end-of-life trajectories, to make definitive conclusions about appropriateness of care.
Identifier
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<a href="http://doi.org/10.1007/s00431-023-05030-z" target="_blank" rel="noreferrer noopener">10.1007/s00431-023-05030-z</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).
2023
administrative health data
Article
August List 2043
Beernaert K
Belgium
Bereavement
Child
Cohen J
Cohort Analysis
Cohort Studies
computer assisted tomography
congenital disorder
Debulpaep S
Decision Making
Deliens L
Drawing
Empirical Research
European Journal of Pediatrics
Female
General Practitioner
genetic association
Genetic Disorder
Health Care System
Human
Major Clinical Study
Male
nuclear magnetic resonance imaging
Palliative Therapy
paramedical personnel
Pediatrics
Physician
Piette V
Terminal Care
X ray
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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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April 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
April 2022 List
URL Address
<a href="http://doi.org/10.1177/02692163221076365" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/02692163221076365</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
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Barriers and facilitators for parents in end-of-life decision-making for neonates at the Neonatal Intensive Care Unit: A qualitative study
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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decision making; emotional regulation; intensive care units; neonatal; Neonatology; parents; qualitative research
Creator
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Piette V; Dombrecht L; Deliens L; Cools F; Chambaere K; Goossens L; Naulaers G; Laroche S; Cornette L; Bekaert E; Decoster P; Beernaert K; Cohen J
Description
An account of the resource
BACKGROUND: Mortality and end-of-life decision-making can occur in newborns, especially within the Neonatal Intensive Care Unit. For parents, participating in end-of-life decision-making is taxing. Knowledge is lacking on what support is helpful to parents during decision-making. AIM: To identify barriers and facilitators experienced by parents in making an end-of-life decision for their infant. DESIGN: Qualitative study using face-to-face semi-structured interviews. SETTING/PARTICIPANTS: We interviewed 23 parents with a child that died after an end-of-life decision at a Neonatal Intensive Care Unit between April and September 2018. RESULTS: Parents stated barriers and facilitators within 4 themes: 1. Clinical knowledge and prognosis; 2. Quality of information provision; 3. Emotion regulation; and 4. Psychosocial environment. Facilitators include knowing whether the prognosis includes long-term negative quality of life, knowing all treatment options, receiving information according to health literacy level, being able to process intense emotions, having experienced counseling and practical help. Barriers include a lack of general medical knowledge, being unprepared for a poor prognosis, having an uninformed psychologist. CONCLUSIONS: We found that clinical information and psychosocial support aid parents in decision-making. Information is best tailored to health literacy. Psychosocial support can be provided by experienced, informed counselors, social services and sibling support, distinguishing between verbal and non-verbal coping preferences, and calm, familiar architecture. Intense emotions may hinder absorption of clinical information, therefore interventions to aid emotion regulation and reduce cognitive load may be looked at in further research. Adjustment of the Situations, Opinions and Options, Parents, Information, Emotions framework based on our results can be evaluated.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/02692163221076365" target="_blank" rel="noreferrer noopener">10.1177/02692163221076365</a>
2022
April 2022 List
Beernaert K
Bekaert E
Chambaere K
Cohen J
Cools F
Cornette L
Decision Making
Decoster P
Deliens L
Dombrecht L
emotional regulation
Goossens L
Intensive Care Units
Laroche S
Naulaers G
Neonatal
Neonatology
Palliative Medicine
Parents
Piette V
Qualitative Research
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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
A name given to the resource
January 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2022.10.037" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpeds.2022.10.037</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
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Population-level analysis of appropriateness of end-of-life care for children with neurological conditions
Publisher
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Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Cohort; Indicators; Quality of Care
Creator
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Piette V; Smets T; Deliens L; van Berlaer G; Beernaert K; Cohen J
Description
An account of the resource
OBJECTIVE: To measure the appropriateness of end-of-life care for children who died with neurological conditions. STUDY DESIGN: Based on linked routinely collected databases, we conducted a population-level decedent retrospective cohort study of children with neurological conditions who died in Belgium between 2010 and 2017. We measured a set of 22 face-validated quality indicators. The set concerns 12 indicators of potentially appropriate end-of-life care (eg, specialized comfort medication, physician contact, continuous care) and 10 indicators of potentially inappropriate end-of-life care (eg, diagnostic tests, phlebotomy). We performed analysis of variance for predictors (age, sex, disease category, nationality, having siblings, year of death) for scales of appropriate and inappropriate care. RESULTS: Between 2010 and 2017, 139 children with neurological conditions died in Belgium. For potentially appropriate care, in the last 30 days 76% of children received clinical care, 55% had continuous care relationships, 17% had contact with a general physician, 8% of children received specialized comfort medication, and 14% received care from a palliative care team. For potentially inappropriate care, in the last 14 days 45% had blood drawn, and 27% were admitted to ICU. CONCLUSIONS: Our study found indications of appropriate as well as inappropriate end-of-life care for children who died with neurological conditions. These findings reveal a substantial margin for potential quality improvement, in regard to palliative care provision, multidisciplinary care, financial support, specialized comfort medication, clinical follow-up, general physician contact, diagnostics, and phlebotomy.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpeds.2022.10.037" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2022.10.037</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).
2022
Beernaert K
Cohen J
cohort
Deliens L
indicators
January List 2023
Journal of Pediatrics
Piette V
Quality Of Care
Smets T
van Berlaer G
-
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
May 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2022.10.037" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpeds.2022.10.037</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
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Population-Level Analysis of Appropriateness of End-of-Life Care for Children with Neurologic Conditions
Publisher
An entity responsible for making the resource available
The Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
terminal care; analysis of variance; article; Belgium; child; cohort analysis; comfort; drawing; female; financial management; follow up; general practitioner; human; intensive care unit; major clinical study; male; nationality; palliative therapy; phlebotomy; physician; retrospective study; sibling; surgery; Terminal Care; total quality management
Creator
An entity primarily responsible for making the resource
Piette V; Smets T; Deliens L; van Berlaer G; Beernaert K; Cohen J
Description
An account of the resource
Abstract Objective: The objective of this study was to measure the appropriateness of end-of-life care for children who died with neurologic conditions. Study design: Based on linked routinely collected databases, we conducted a population-level decedent retrospective cohort study of children with neurologic conditions who died in Belgium between 2010 and 2017. We measured a set of 22 face-validated quality indicators. The set concerns 12 indicators of potentially appropriate end-of-life care (eg, specialized comfort medication, physician contact, continuous care) and 10 indicators of potentially inappropriate end-of-life care (eg, diagnostic tests, phlebotomy). We performed ANOVA for predictors (age, sex, disease category, nationality, having siblings, year of death) for scales of appropriate and inappropriate care. Results: Between 2010 and 2017, 139 children with neurologic conditions died in Belgium. For potentially appropriate care, in the last 30 days, 76% of children received clinical care, 55% had continuous care relationships, 17% had contact with a general physician, 8% of children received specialized comfort medication, and 14% received care from a palliative care team. For potentially inappropriate care, in the last 14 days, 45% had blood drawn and 27% were admitted to intensive care unit. Conclusions: Our study found indications of appropriate as well as inappropriate end-of-life care for children who died with neurologic conditions. These findings reveal a substantial margin for potential quality improvement, in regard to palliative care provision, multidisciplinary care, financial support, specialized comfort medication, clinical follow-up, general physician contact, diagnostics, and blood drawing.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpeds.2022.10.037" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2022.10.037</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).
2023
Analysis of Variance
Article
Beernaert K
Belgium
Child
Cohen J
Cohort Analysis
Comfort
Deliens L
Drawing
Female
financial management
Follow Up
General Practitioner
Human
Intensive Care Unit
Major Clinical Study
Male
May List 2023
nationality
Palliative Therapy
Phlebotomy
Physician
Piette V
Retrospective Study
Sibling
Smets T
Surgery
Terminal Care
The Journal Of Pediatrics
Total Quality Management
van Berlaer G