1
40
5
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Dublin Core
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Title
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July 2021 List
Text
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Citation List Month
July 2021 List
URL Address
<a href="http://doi.org/10.1111/apa.15061" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.15061</a>
Dublin Core
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Title
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Survey of paediatricians caring for children with life-limiting conditions found that they were involved in advance care planning
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Child; Surveys and Questionnaires; Communication; Parents; communication; Pediatricians; paediatric palliative care; Advance Care Planning; shared decision-making
Creator
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Fahner JC; Rietjens JAC; van der Heide A; van Delden JJM; Kars MC
Description
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AIM: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions. METHODS: Paediatricians from five Dutch university hospitals and the national oncology centre completed a survey during May to September 2017, which investigated experiences with ACP in their most recent case of a deceased child and with ACP in general. RESULTS: A total of 207 paediatricians responded (36%). After exclusion of responses with insufficient data (n = 39), 168 were analysed (29%). These included experiences with an individual case in 86%. ACP themes were discussed with parents in all cases. Topics common to many cases were diagnosis, life expectancy, care goals, the parent's fears and code status. ACP conversations occurred with children in 23% of cases. The joy in living was the most frequent topic. The frequency of ACP conversations was insufficient according to 49% of the respondents. In 60%, it was stated that ACP has to result in a documented code status. CONCLUSION: Paediatricians reported having ACP conversations mainly with parents focusing on medical issues. There was limited insight into the child's preferences for care and treatment.
Identifier
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<a href="http://doi.org/10.1111/apa.15061" target="_blank" rel="noreferrer noopener">10.1111/apa.15061</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Acta Paediatrica
Advance Care Planning
Child
Communication
Fahner JC
July 2021 List
Kars MC
paediatric palliative care
Parents
Pediatricians
Rietjens JAC
Shared Decision-making
Surveys And Questionnaires
van Delden JJM
van der Heide 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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December 2020 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 2020 List
URL Address
<a href="http://doi.org/10.1007/s00431-020-03824-z" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00431-020-03824-z</a>
Dublin Core
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Title
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Anticipating the future of the child and family in pediatric palliative care: a qualitative study into the perspectives of parents and healthcare professionals
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
2020
Subject
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Advance care planning; Communication; Goals of care; Pediatric palliative care
Creator
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Verberne LM; Fahner JC; Sondaal SFV; Schouten-van Meeteren AYN; de Kruiff CC; van Delden JJM; Kars MC
Description
An account of the resource
Preparing for future scenarios in pediatric palliative care is perceived as complex and challenging by both families and healthcare professionals. This interpretative qualitative study using thematic analysis aims to explore how parents and healthcare professionals anticipate the future of the child and family in pediatric palliative care. Single and repeated interviews were undertaken with 42 parents and 35 healthcare professionals of 24 children, receiving palliative care. Anticipating the future was seen in three forms: goal-directed conversations, anticipated care, and guidance on the job. Goal-directed conversations were initiated by either parents or healthcare professionals to ensure others could align with their perspective regarding the future. Anticipated care meant healthcare professionals or parents organized practical care arrangements for future scenarios with or without informing each other. Guidance on the job was a form of short-term anticipation, whereby healthcare professionals guide parents ad hoc through difficult situations.Conclusion: Anticipating the future of the child and family is mainly focused on achievement of individual care goals of both families and healthcare professionals, practical arrangements in advance, and short-term anticipation when a child deteriorates. A more open approach early in disease trajectories exploring perspectives on the future could allow parents to anticipate more gradually and to integrate their preferences into the care of their child. What is Known: • Anticipating the future in pediatric palliative care occurs infrequently and too late. What is New: • Healthcare professionals and parents use different strategies to anticipate the future of children receiving palliative care, both intentionally and unwittingly. Strategies to anticipate the future are goal-directed conversations, anticipated care, and guidance on the job. • Parents and healthcare professionals are engaged to a limited extent in ongoing explorative conversations that support shared decision-making regarding future care and treatment.
Identifier
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<a href="http://doi.org/10.1007/s00431-020-03824-z" target="_blank" rel="noreferrer noopener">10.1007/s00431-020-03824-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).
2020
Advance Care Planning
Communication
de Kruiff CC
December 2020 List
European Journal of Pediatrics
Fahner JC
Goals Of Care
Kars MC
Pediatric Palliative Care
Schouten-Van Meeteren AYN
Sondaal SFV
van Delden JJM
Verberne LM
-
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 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
April 2018 List
URL Address
<a href="http://doi.org/10.1186/s12904-018-0274-8" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-018-0274-8</a>
Dublin Core
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Title
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Barriers and facilitators to the implementation of a paediatric palliative care team
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
health care personnel; palliative therapy; Child; Only Child; Palliative Care; Pilot Projects; human experiment; major clinical study; pilot study; expectation; concrete; child; human; female; male; pediatrics; article; awareness; patient satisfaction; tertiary health care
Creator
An entity primarily responsible for making the resource
Verberne LM; Kars MC; Schepers SA; Schouten-Van Meeteren AYN; Grootenhuis MA; Van Delden JJM
Description
An account of the resource
Background: Over the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC). However, implementing a PPCT into an organisation is a challenge. The objective of this study was to identify barriers and facilitators reported by healthcare professionals (HCPs) in primary, secondary or tertiary care for implementing a newly initiated multidisciplinary PPCT to bridge the gap between hospital and home. Methods: The Measurement Instrument for Determinants of Innovations (MIDI) was used to assess responses of 71 HCPs providing PPC to one or more of the 129 children included in a pilot study of a PPCT based at a university children's hospital. The MIDI (29 items) assessed barriers and facilitators to implementing the PPCT by using a 5-point scale (completely disagree to completely agree) and additional open-ended questions. Items to which >=20% of participants responded with 'totally disagree/disagree' and >=80% responded with 'agree/totally agree' were considered as barriers and facilitators, respectively. A general inductive approach was used for open-ended questions. Results: Reported barriers to implementing a PPCT were related to the HCP's own organisation (e.g., no working arrangements related to use of the intervention [PPCT] registered, other organisational changes such as merger going on). Reported facilitators were mainly related to the intervention (correctness, simplicity, observability and relevancy) and the user scale (positive outcome expectations, patient satisfaction) and only once to the organisation scale (information accessibility). Additionally, HCPs expressed the need for clarity about tasks of the PPCT and reported having made a transition from feeling threatened by the PPCT to satisfaction about the PPCT. Conclusion: Positive experiences with the PPCT are a major facilitator for implementing a PPCT. Tailored organisational strategies such as working arrangements by management, concrete information about the PPCT itself and the type of support provided by the PPCT should be clearly communicated to involved HCPs to increase awareness about benefits of the PPCT and ensure a successful implementation. New PPCTs need protection and resources in their initial year to develop into experienced and qualified PPCTs.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-018-0274-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0274-8</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
April 2018 List
Article
Awareness
BMC Palliative Care
Child
concrete
Expectation
Female
Grootenhuis MA
Health Care Personnel
Human
Human Experiment
Kars MC
Major Clinical Study
Male
Only Child
Palliative Care
Palliative Therapy
Patient Satisfaction
Pediatrics
Pilot Projects
Pilot Study
Schepers SA
Schouten-Van Meeteren AYN
tertiary health care
van Delden JJM
Verberne LM
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1467-8519.2011.01939.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1467-8519.2011.01939.x</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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End-of-life decision-making in Canada: the report by the Royal Society of Canada expert panel on end-of-life decision-making.
Publisher
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Bioethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Child; Humans; United States; Palliative Care; Advance Directives; Adult; Canada; Deep Sedation; Withholding Treatment; Aged; Euthanasia; Europe; Suicide; decision making; Active; DNAR; Assisted/lj [Legislation & Jurisprudence]; Terminal Care; Voluntary; Bioethical Issues; Public Opinion
Creator
An entity primarily responsible for making the resource
Schuklenk U; van Delden JJM; Downie Jocelyn; McLean SAM; Upshur R; Weinstock D
Description
An account of the resource
This report on end-of-life decision-making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters. Chapter 1 reviews what is known about end-of-life care and opinions about assisted dying in Canada. Chapter 2 reviews the legal status quo in Canada with regard to various forms of assisted death. Chapter 3 reviews ethical issues pertaining to assisted death. The analysis is grounded in core values central to Canada's constitutional order. Chapter 4 reviews the experiences had in a number of jurisdictions that have decriminalized or recently reviewed assisted dying in some shape or form. Chapter 5 provides recommendations with regard to the provision of palliative care in Canada, as well as recommendations for reform with respect to the various forms of assisted death covered in this document.Copyright © 2011 Blackwell Publishing Ltd.
Identifier
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<a href="http://doi.org/10.1111/j.1467-8519.2011.01939.x" target="_blank" rel="noreferrer">10.1111/j.1467-8519.2011.01939.x</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2011
Active
Adult
Advance Directives
Aged
Assisted/lj [Legislation & Jurisprudence]
Backlog
Bioethical Issues
Bioethics
Canada
Child
Decision Making
Deep Sedation
DNAR
Downie Jocelyn
Europe
Euthanasia
Humans
Journal Article
McLean SAM
Palliative Care
Public Opinion
Schuklenk U
Suicide
Terminal Care
United States
Upshur R
van Delden JJM
Voluntary
Weinstock D
Withholding Treatment
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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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January 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
January 2018 List
URL Address
<a href="http://doi.org/10.1177/0269216317692682" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216317692682</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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Parental experiences with a paediatric palliative care team: 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
2017
Subject
The topic of the resource
case management; palliative therapy; Pediatrics; qualitative research; Child; Clinical Article; concrete; coordination; expectation; Female; Human; Interview; Male; thematic analysis
Creator
An entity primarily responsible for making the resource
Verberne LM; Schouten-van Meeteren AYN; Bosman DK; Colenbrander DA; Jagt CT; Grootenhuis MA; van Delden JJM; Kars MC
Description
An account of the resource
Background: Parents of children with a life-limiting disease have to rely on themselves at home while adequate paediatric palliative care is lacking. In several countries, paediatric palliative care teams are introduced to ensure continuity and quality of care and to support the child and the family. Yet, little is known about how parents experience such multidisciplinary teams. Aim: To obtain insight into the support provided by a new paediatric palliative care team from the parents' perspective. Design: An interpretative qualitative interview study using thematic analysis was performed. Setting/participants: A total of 47 single or repeated interviews were undertaken with 42 parents of 24 children supported by a multidisciplinary paediatric palliative care team located at a university children's hospital. The children suffered from malignant or non-malignant diseases. Results: In advance, parents had limited expectations of the paediatric palliative care team. Some had difficulty accepting the need for palliative care for their child. Once parents experienced what the team achieved for their child and family, they valued the team's involvement. Valuable elements were as follows: (1) process-related aspects such as continuity, coordination of care, and providing one reliable point of contact; (2) practical support; and (3) the team members' sensitive and reliable attitude. As a point of improvement, parents suggested more concrete clarification upfront of the content of the team's support. Conclusion: Parents feel supported by the paediatric palliative care team. The three elements valued by parents probably form the structure that underlies quality of paediatric palliative care. New teams should cover these three valuable elements.
Identifier
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<a href="http://doi.org/10.1177/0269216317692682" target="_blank" rel="noreferrer">10.1177/0269216317692682</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
Bosman DK
Case Management
Child
Clinical Article
Colenbrander DA
concrete
Coordination
Expectation
Female
Grootenhuis MA
Human
Interview
Jagt CT
January 2018 List
Kars MC
Male
Palliative Medicine
Palliative Therapy
Pediatrics
Qualitative Research
Schouten-Van Meeteren AYN
Thematic Analysis
van Delden JJM
Verberne LM