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Dublin Core
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Title
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December 2020 List
Text
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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
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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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
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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
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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.
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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
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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
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