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

Danielle D DeCourcey, Lindsay Partin, Anna Revette, Rachelle Bernacki, Joanne Wolfe
Journal of Pediatrics 2020 September 16

OBJECTIVES: To develop a generalizable advance care planning ACP intervention for children and children, adolescents, and young adults with serious illness using a multi-stage stakeholder driven approach.

STUDY DESIGN: We first convened an expert panel of multidisciplinary 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 AYAs 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 PediSICP implementation. Expert panelists then reviewed, amended and finalized the guide.

RESULTS: Stakeholders (34 HCPs, 9 parents, and 7 seriously ill AYAs) participated in focus groups and interviews. Stakeholders validated and refined the guide and PediSICP intervention and identified barriers to PediSICP implementation including need for HCP training, competing demands, uncertainty regarding timing and documentation of ACP discussions.

CONCLUSION: The finalized PediSICP intervention includes a structured HCP and family ACP conversation occasion supported by a three-part communication tool and bolstered by focused HCP training. We also identified strategies to ameliorate implementation barriers. Future research will determine feasibility of the PediSICP and whether it improves care alignment with patient and family goals.

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