1
40
5
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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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October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1016/j.ssmqr.2023.100324" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.ssmqr.2023.100324</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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"The medicine is the easy part": Pediatric physicians' emotional labor in end-of-life care
Publisher
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SSM - Qualitative Research in Health
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; child; terminal care; article; female; human; male; physician; clinical article; pediatrician; burnout; interview; wellbeing; university hospital; medical education; responsibility; work environment; drawing; seashore; emotional support; buffer
Creator
An entity primarily responsible for making the resource
Gengler AM
Description
An account of the resource
Physicians who care for children with life-threatening conditions are uniquely positioned to support families through the dying phase when treatment efforts have failed. Taking on this role for families requires a great deal of time and strategic emotional labor. Drawing on in-depth interviews with 12 physicians across two different children's hospitals on the east coast, I find that these physicians conceptualize this work as a fundamental responsibility to the children and families in their care despite believing that their formal medical training fails to prepare them for this component of their jobs. These physicians deliberately laid groundwork for the potential that children may die from their earliest interactions with patients and worked to shift families away from continued medical intervention when they believed such efforts to be futile. They described this work as deeply meaningful and rewarding, but potentially emotionally overwhelming. These physicians felt duty-bound to address what they perceived as a deficit in medical training by intentionally modeling emotionally intense exchanges with families for the next generation of practitioners. Though these dual commitments demanded extensive and potentially exhausting emotional labor, this particular group of physicians was able to use the structural features of their faculty positions in academic medical centers to buffer against potential burnout, maintain their emotional capacity at work and home, and protect their own well-being. My analysis shows that when physicians inhabit structurally favorable working conditions and conceptualize their jobs in ways that center emotional support for patients they may use these resources to work to mitigate disparities in care and take pride in their ability to provide sustained and substantive emotional support at the end of life.Copyright © 2023
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ssmqr.2023.100324" target="_blank" rel="noreferrer noopener">10.1016/j.ssmqr.2023.100324</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
Article
buffer
Burnout
Child
Clinical Article
Drawing
emotional support
Female
Gengler AM
Human
Interview
Male
Medical Education
October List 2042
Pediatrician
Physician
responsibility
seashore
SSM - Qualitative Research in Health
Terminal Care
University Hospital
Wellbeing
work environment
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
August 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
The topic of the resource
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
An entity primarily responsible for making the resource
Piette V; Deliens L; Debulpaep S; Cohen J; Beernaert K
Description
An account of the resource
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
An unambiguous reference to the resource within a given context
<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
-
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
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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
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<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
-
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 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2018 List
URL Address
<a href="http://doi.org/10.1016/j.ijnurstu.2018.06.015" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.ijnurstu.2018.06.015</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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Facilitating transition from children's to adult services for young adults with life-limiting conditions (TASYL): Programme theory developed from a mixed methods realist evaluation
Publisher
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International journal of nursing studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
decision making; staff training; palliative therapy; human experiment; skill; childhood; human; article; child; female; male; adult; interview; clinical article; young adult; theoretical study; transition to adult care; drawing
Creator
An entity primarily responsible for making the resource
Kerr H; Price J; Nicholl H; O'Halloran P
Description
An account of the resource
DESIGN: A realist evaluation using mixed methods with four phases of data collection in the island of Ireland. Phase one: a questionnaire survey of statutory and non-statutory organisations providing health, social and educational services to young adults making the transition from children's to adult services in Northern Ireland and one Health Services Executive area in the Republic of Ireland. Phase two: interviews with eight young adults. Phase three: two focus groups with a total of ten parents/carers. Phase four: interviews with 17 service providers. Data were analysed seeking to explain the impact of services and interventions, and to identify organisational and human factors thought to influence the quality, safety and continuity of care. RESULTS: Eight interventions were identified as facilitating transition from children's to adult services. The inter-relationships between these interventions supported two complementary models for successful transition. One focused on fostering a sense of confidence among adult service providers to manage the complex care of the young adult, and empowering providers to make the necessary preparations in terms of facilities and staff training. The other focused on the young adults, with service providers collaborating to develop an autonomous young adult, whilst actively involving parents/carers. These models interact in that a knowledgeable, confident young adult who is growing in decision-making abilities is best placed to take advantage of services - but only if those services are properly resourced and run by staff with appropriate skills. No single intervention or stakeholder group can guarantee a successful transition. Rather, service providers could work with young adults and their parents/carers to consider desired outcomes, and the range of interventions, in light of the organisational and human resources available in their context. This would allow them to supplement the organisational context where necessary and select interventions that are more likely to deliver outcomes in that context. BACKGROUND: Improvements in care and treatment have led to more young adults with life-limiting conditions living beyond childhood, necessitating a transition from children's to adult services. Given the lack of evidence on interventions to promote transition, it is important that those creating and evaluating interventions develop a theoretical understanding of how such complex interventions may work. OBJECTIVES: To develop theory about the interventions, and organisational and human factors that help or hinder a successful transition from children's to adult services, drawing on the experience, knowledge, and insights of young adults with life-limiting conditions, their parents/carers, and service providers.
Identifier
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<a href="http://doi.org/10.1016/j.ijnurstu.2018.06.015" target="_blank" rel="noreferrer noopener">10.1016/j.ijnurstu.2018.06.015</a>
2018
Adult
Article
Child
childhood
Clinical Article
December 2018 List
Decision Making
Drawing
Female
Human
Human Experiment
International Journal Of Nursing Studies
Interview
Kerr H
Male
Nicholl H
O'Halloran P
Palliative Therapy
Price J
Skill
staff training
theoretical study
Transition To Adult Care
Young Adult
-
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
December 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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A Sociocultural Approach to Children's Perceptions of Death and Loss.
Publisher
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Omega: Journal Of Death & Dying
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Death; Prevention; Anxiety; Bereavement; Child Development; Cognition; Content Analysis (communication); Drawing; Emotions (psychology); Fear; Grief; Interviewing; Phenomenology; Attitudes Toward Death; Social Context; Thematic Analysis
Death; Drawings; Loss; Phenomenography; Young Children
Creator
An entity primarily responsible for making the resource
Sungeun Y; Soyeon P
Description
An account of the resource
By employing the phenomenographic approach, the present study explored children's cognitive understanding of and emotional responses to death and bereavement. Participants included 52 Korean, 16 Chinese, and 16 Chinese American children ages 5-6. Thematic analysis of children's drawings and open-ended interviews revealed that most children associated death with negative emotions such as fear, anxiety, and sadness. The majority of children used realistic expressions to narrate death. The core themes from their drawings included causes for death, attempts to stop the dying, and situations after death. This study contributes to the literature by targeting young children who have been relatively excluded in death studies and provides evidence in the usefulness of drawings as a developmentally appropriate data collection tool. The findings also enrich our knowledge about children's understanding of death and bereavement, rooted in the inductive analysis of empirical data with children from culturally diverse backgrounds.
Identifier
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<a href="http://doi.org/10.1177/0030222817693138" target="_blank" rel="noreferrer">10.1177/0030222817693138</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).
2017
anxiety
Attitudes Toward Death
Bereavement
Child Development
Cognition
Content Analysis (communication)
Death
December 2017 List
Drawing
Drawings
Emotions (psychology)
Fear
Grief
Interviewing
Loss
Omega: Journal Of Death & Dying
Phenomenography
Phenomenology
Prevention
Social Context
Soyeon P
Sungeun Y
Thematic Analysis
Young Children