Development of a Stakeholder Driven Serious Illness Communication Program for Advance Care Planning in Children, Adolescents, and Young Adults with Serious Illness

Title

Development of a Stakeholder Driven Serious Illness Communication Program for Advance Care Planning in Children, Adolescents, and Young Adults with Serious Illness

Creator

DeCourcey DD; Partin L; Revette A; Bernacki R; Wolfe J

Publisher

Journal of Pediatrics

Date

2021

Subject

conversations guides decision making intervention development life-limiting illness life-threatening illness parents pediatric palliative care qualitative research stakeholder engagement

Description

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.

Rights

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).

Citation List Month

March 2021 List

Collection

Citation

DeCourcey DD; Partin L; Revette A; Bernacki R; Wolfe J, “Development of a Stakeholder Driven Serious Illness Communication Program for Advance Care Planning in Children, Adolescents, and Young Adults with Serious Illness,” Pediatric Palliative Care Library, accessed May 14, 2021, https://pedpalascnetlibrary.omeka.net/items/show/17471.

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