1
40
2
-
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
April 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
April List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.042" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.12.042</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
The Process and Impact of a Stakeholder Driven Serious Illness Communication Program for Advance Care Planning in AYAs and Parents of Children with Serious Illness (TH114C)
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Advance Care Planning
Creator
An entity primarily responsible for making the resource
Decourcey DD; Schwartz A; Bernacki R; Lach S; Wolfe J
Description
An account of the resource
Outcomes: 1. Describe the evidence-based benefits of serious illness conversations 2. Describe outcomes from a structured, multicomponent advance care planning communication intervention, the Pediatric Serious Illness Communication Program Background Early pediatric advance care planning (ACP), which aims to ensure care is aligned with patient and family goals and values, is associated with better end-of-life outcomes. However, ACP for seriously ill children, adolescents, and young adults (AYAs) remains uncommon and many pediatric clinicians report a lack of comfort with serious illness communication. Objectives We aimed to pilot the feasibility and acceptability of a multicomponent, structured ACP communication intervention, the Pediatric Serious Illness Communication Program (PediSICP), to teach serious illness communication skills to non-palliative care clinicians and facilitate longitudinal ACP. Methods Single-arm feasibility pilot of the PediSICP in AYAs with serious illness (13+), parents of children with serious illness, and clinicians. The PediSICP consists of an ACP communication occasion supported by a three-part conversation tool preceded by focused clinician training. The a priori feasibility threshold was >70% provider completion of the PediSICP intervention. Results We conducted 10 virtual trainings with interdisciplinary clinicians (N=40); 62% reported no prior ACP training. After training, 97% of participants were highly satisfied with training. Trained clinicians (n=30; 75%) conducted and documented 42 ACP conversations with 36 parents and six AYAs using the PediSICP framework; median conversation duration was 26 minutes [IQR 10–45]. All clinicians agreed that they felt prepared for the conversation and would recommend the PediSICP to colleagues. Thirty-three parents and five AYAs completed the intervention and reported participation was worthwhile (85%), they felt listened to (95%), and would recommend the PediSICP to other families (90%). Conclusions The PediSICP ACP intervention is feasible, acceptable, and highly valued by AYAs and parents of seriously ill children. Novel integration of web conferencing makes this program easily scalable for wider dissemination. Further evaluation will occur through post-intervention surveys and interviews to explore patient and family report of shared decision making, therapeutic alliance, communication quality, and psychological distress.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.042" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.042</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
Advance Care Planning
April List 2023
Bernacki R
DeCourcey DD
Journal of Pain and Symptom Management
Lach S
Schwartz A
Wolfe J
-
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
March 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
March 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2020.09.030" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpeds.2020.09.030</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
Development of a Stakeholder Driven Serious Illness Communication Program for Advance Care Planning in Children, Adolescents, and Young Adults with Serious Illness
Publisher
An entity responsible for making the resource available
Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
conversations guides decision making intervention development life-limiting illness life-threatening illness parents pediatric palliative care qualitative research stakeholder engagement
Creator
An entity primarily responsible for making the resource
DeCourcey DD; Partin L; Revette A; Bernacki R; Wolfe J
Description
An account of the resource
Objectives: To develop a generalizable advance care planning (ACP) intervention for children, adolescents, and young adults with serious illness using a multistage, stakeholder-driven approach. Study design: We first convened an expert panel of multidisciplinary health care providers (HCPs), researchers, and parents to delineate key ACP intervention elements. We then adapted an existing adult guide for use in pediatrics and conducted focus groups and interviews with HCPs, parents, and seriously ill adolescents and young adults to contextualize perspectives on ACP communication and our Pediatric Serious Illness Communication Program (PediSICP). Using thematic analysis, we identified guide adaptations, preferred content, and barriers for Pedi-SICP implementation. Expert panelists then reviewed, amended and finalized intervention components. Result(s): Stakeholders (34 HCPs, 9 parents, and 7 seriously ill adolescents and young adults) participated in focus groups and interviews. Stakeholders validated and refined the guide and PediSICP intervention and identified barriers to PediSICP implementation, including the need for HCP training, competing demands, uncertainty regarding timing, and documentation of ACP discussions. Conclusion(s): The finalized PediSICP intervention includes a structured HCP and family ACP communication occasion supported by a 3-part communication tool and bolstered by focused HCP training. We also identified strategies to ameliorate implementation barriers. Future research will determine the feasibility of the PediSICP and whether it improves care alignment with patient and family goals. Copyright © 2020 Elsevier Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpeds.2020.09.030" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2020.09.030</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
Bernacki R
conversations guides decision making intervention development life-limiting illness life-threatening illness parents pediatric palliative care qualitative research stakeholder engagement
DeCourcey DD
Journal of Pediatrics
March 2021 List
Partin L
Revette A
Wolfe J