1
40
3
-
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 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2021 List
URL Address
<a href="http://doi.org/10.1186/s12887-020-1979-4" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12887-020-1979-4</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
Key constituents for integration of care for children assisted with long-term home ventilation: a European study
Publisher
An entity responsible for making the resource available
BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Access to care; Care coordination; Caregivers; Child; Child Health; Child Health Services; Complex care needs; Europe; Family partnership; Governance; Home Care Services; Humans; Long-term home ventilation; Palliative care; Quality of care; Respiration Artificial; Respite care; Surveys and Questionnaires
Creator
An entity primarily responsible for making the resource
Brenner M; O'Shea MP; Larkin P; Berry J
Description
An account of the resource
BACKGROUND: The number of children requiring long-term home ventilation has consistently increased over the last 25 years. Given the growing population of children with complex care needs (CCNs), this was an important area of focus within the Models of Child Health Appraised (MOCHA) project, funded by the European Union (EU) under the Horizon 2020 programme. We examined the structures and processes of care in place for children with CCNs and identified key constituents for effective integration of care for these children at the community and acute care interface across 30 EU/ European Economic Area (EEA) countries. METHODS: This was a non-experimental descriptive study with an embedded qualitative element. Data were collected by a Country Agent in each of the 30 countries, a local expert in child health services. Data were analysed using descriptive statistics and a thematic analysis was undertaken of the free text data provided. RESULTS: A total of 27 surveys were returned from a possible 30 countries (90.0%) countries. One respondent indicated that their country does not have children on long-term ventilation (LTV) in the home, therefore, responses of 26 countries (86.7%) were analysed. None of the responding countries reported that they had all of the core components in place in their country. Three themes emerged from the free text provided: 'family preparedness for transitioning to home', 'coordinated pathway to specialist care' and 'legal and governance structures'. CONCLUSIONS: While the clinical care of children on LTV in the acute sector has received considerable attention, the results identify the need for an enhanced focus on the care required following discharge to the community setting. The results highlight the need for a commitment to supporting care delivery that acknowledges the complexity of contemporary child health issues and the context of the families that become their primary care givers.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12887-020-1979-4" target="_blank" rel="noreferrer noopener">10.1186/s12887-020-1979-4</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).
2020
Access to care
Berry J
Bmc Pediatrics
Brenner M
Care coordination
Caregivers
Child
Child Health
Child Health Services
Complex care needs
Europe
Family partnership
Governance
home care services
Humans
Larkin P
Long-term home ventilation
May 2021 List
O'Shea MP
Palliative Care
Quality Of Care
Respiration Artificial
Respite Care
Surveys And Questionnaires
-
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
September 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2021 List
URL Address
<a href="http://doi.org/10.1136/medethics-2020-107099" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/medethics-2020-107099</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
Initiating technology dependence to sustain a child's life: a systematic review of reasons
Publisher
An entity responsible for making the resource available
Journal of Medical Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
children; decision-making; life sustaining treatment; Quality of life; Technology dependence; applied and professional ethics
Creator
An entity primarily responsible for making the resource
Alexander D; Quirke MB; Berry J; Eustace-Cook J; Leroy P; Masterson K; Healy M; Brenner M
Description
An account of the resource
BACKGROUND: Decision-making in initiating life-sustaining health technology is complex and often conducted at time-critical junctures in clinical care. Many of these decisions have profound, often irreversible, consequences for the child and family, as well as potential benefits for functioning, health and quality of life. Yet little is known about what influences these decisions. A systematic review of reasoning identified the range of reasons clinicians give in the literature when initiating technology dependence in a child, and as a result helps determine the range of influences on these decisions. METHODS: Medline, EMBASE, CINAHL, PsychINFO, Web of Science, ASSIA and Global Health Library databases were searched to identify all reasons given for the initiation of technology dependence in a child. Each reason was coded as a broad and narrow reason type, and whether it supported or rejected technology dependence. RESULTS: 53 relevant papers were retained from 1604 publications, containing 116 broad reason types and 383 narrow reason types. These were grouped into broad thematic categories: clinical factors, quality of life factors, moral imperatives and duty and personal values; and whether they supported, rejected or described the initiation of technology dependence. The majority were conceptual or discussion papers, less than a third were empirical studies. Most discussed neonates and focused on end-of-life care. CONCLUSIONS: There is a lack of empirical studies on this topic, scant knowledge about the experience of older children and their families in particular; and little written on choices made outside 'end-of-life' care. This review provides a sound basis for empirical research into the important influences on a child's potential technology dependence.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/medethics-2020-107099" target="_blank" rel="noreferrer noopener">10.1136/medethics-2020-107099</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).
2021
Alexander D
applied and professional ethics
Berry J
Brenner M
Children
Decision-making
Eustace-Cook J
Healy M
Journal of Medical Ethics
Leroy P
Life Sustaining Treatment
Masterson K
Quality Of Life
Quirke MB
September 2021 List
Technology dependence
-
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
December 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
December List 2022
URL Address
<a href="http://doi.org/10.1186/s12904-022-01078-0" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-022-01078-0</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
Expert Survey on Coverage and Characteristics of Pediatric Palliative Care in Europe - A Focus on Home Care
Publisher
An entity responsible for making the resource available
BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Child; Europe; Health Care Surveys; Health care quality; access; and evaluation; Home Care Services; Home Care Services/sn [Statistics & Numerical Data]; Home care services; Humans; Palliative Care; Palliative Care/sn [Statistics & Numerical Data]; Palliative care; Pediatrics; Pediatrics/sn [Statistics & Numerical Data]
Creator
An entity primarily responsible for making the resource
Wager J; Kubek LA; Brenner M; Calmanti S; Doyle C; Lovgren M; Kreicbergs U; Kremer L; Le Moine P; Robert G; Schuiling-Otten M; Schroder-Back P; Verhagen E; Zernikow B
Description
An account of the resource
BACKGROUND: For children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care characteristics. The aim of the study was therefore to describe the association between pediatric palliative care coverage and national activities and obtain detailed information on the pediatric palliative home care structure in different European countries. METHODS: Online survey with in-country experts from N = 33 European countries. RESULTS: Pediatric palliative home care (65.6%) represented the most pediatric palliative care units (15.6%) and the least common services. National documents constituted the most widespread national pediatric palliative care activity (59.4%) and were associated with available services. Pediatric palliative home care could be mostly accessed as a service free of charge to families (95.2%) from the time of a child's diagnosis (85.7%). In most countries, oncological and non-oncological patients were cared for in pediatric palliative home care. Only a minority of home care teams covered home-ventilated children. Pediatric palliative home care usually comprised medical care (81.0%), care coordination (71.4%), nursing care (75.0%) and social support (57.1%). Most countries had at least two professional groups working in home care teams (81.0%), mostly physicians and nurses. In many countries, pediatric palliative home care was not available in all regions and did not offer a 24 h-outreach service. CONCLUSIONS: Pediatric palliative care provision in Europe is heterogeneous. Further work on country-specific structures is needed. Copyright © 2022. The Author(s).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-022-01078-0" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-01078-0</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
access
and evaluation
BMC Palliative Care
Brenner M
Calmanti S
Child
December List 2022
Doyle C
Europe
Health Care Quality
Health Care Surveys
home care services
Home Care Services/sn [statistics & Numerical Data]
Humans
Kreicbergs U
Kremer L
Kubek LA
Le Moine P
Lövgren M
Palliative Care
Palliative Care/sn [Statistics & Numerical Data]
Pediatrics
Pediatrics/sn [statistics & Numerical Data]
Robert G
Schroder-Back P
Schuiling-Otten M
Verhagen E
Wager J
Zernikow B