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Dublin Core
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Title
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April 2020 List
Text
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Citation List Month
April 2020 List
URL Address
<a href="http://doi.org/10.1542/peds.2019-2241" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2019-2241</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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Toward an Understanding of Advance Care Planning in Children With Medical Complexity
Publisher
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Pediatrics
Date
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2020
Subject
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advance care planning; children; children with medical complexity; healthcare professional perspectives; healthcare professionals; healthcare provider perspectives; healthcare providers; parent perspectives; parental perspectives
Creator
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Orkin J; Beaune L; Moore C; Weiser N; Arje D; Rapoport A; Netten K; Adams S; Cohen E; Amin R
Description
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BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP) conversations need to be uniquely tailored to this population. Our primary objective for this study was to develop an in-depth understanding of the ACP experiences from the perspectives of both parents and health care providers (HCPs) of CMC. METHODS: We conducted 25 semistructured interviews with parents of CMC and HCPs of various disciplines from a tertiary pediatric hospital. Interview guide questions were focused on ACP, including understanding of the definition, positive and negative experiences, and suggestions for improvement. Interviews were conducted until thematic saturation was reached. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis. RESULTS: Fourteen mothers and 11 HCPs participated in individual interviews. Interviews revealed 4 major themes and several associated subthemes (in parentheses): (1) holistic mind-set, (2) discussion content (beliefs and values, hopes and goals, and quality of life), (3) communication enhancers (partnerships in shared decision-making, supportive setting, early and ongoing conversations, consistent language and practice, family readiness, provider expertise in ACP discussions, and provider comfort in ACP discussions), and (4) the ACP definition. CONCLUSIONS: Family and HCP perspectives revealed a need for family-centered ACP for CMC and their families. Our results aided the development of a family-centered framework to enhance the delivery of ACP through a holistic mind-set, thoughtful discussion content, and promoting of conversation enhancers.
Identifier
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<a href="http://doi.org/10.1542/peds.2019-2241" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-2241</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
Adams S
Advance Care Planning
Amin R
April 2020 List
Arje D
Beaune L
Children
Children With Medical Complexity
Cohen E
healthcare professional perspectives
Healthcare Professionals
healthcare provider perspectives
Healthcare Providers
Moore C
Netten K
Orkin J
parent perspectives
Parental Perspectives
Pediatrics
Rapoport A
Weiser N