The Process And Impact Of A Stakeholder Driven Adaptation Of The Serious Illness Conversation Guide For Ayas And Parents Of Children With Serious Illness

•Describe the process of stakeholder engagement in the adaptation and design of a pediatric communication guide.•Name key components of a communication guide to facilitate pediatric advance care planning. Early conversations about advance care planning (ACP) are associated with better outcomes for seriously ill adults. Despite a parental desire for earlier and more ACP, large scale adoption of ACP for seriously ill children, adolescents, and young adults (AYAs) remains unrealized. There are few rigorously developed interventions to support clinicians in pediatric ACP communication to ensure care is aligned with family goals and values. To conceptualize, adapt and refine a pediatric serious illness communication guide (PediSICG) to facilitate ACP. We convened a national expert panel of researchers, multidisciplinary clinicians, and parents to delineate key guide components, after which we adapted two drafts of PediSICG from Ariadne Lab's Serious Illness Conversation Guide, one for parents and one for AYAs. Qualitative methods, including focus groups with multidisciplinary clinicians and interviews with parents and seriously ill AYAs at Boston Children's Hospital, were then utilized to refine PediSICG language and to contextualize perspectives surrounding serious illness conversations. Comprehensive thematic analysis of the data focused on identifying appropriate guide adaptations and considerations for future interventions. The expert panel then reviewed, amended and finalized the guides. The sample included 51 stakeholders (35 clinicians, 9 parents and 7 AYAs). The adapted guides address: eliciting illness understanding, gaining a shared understanding of hopes and worries, exploring what is most important to the child and/or family, eliciting sources of support, and providing goal concordant recommendations. Stakeholder input led to pediatric specific refinements to guide language and intervention enhancements including a preparatory family worksheet and a structured template to document conversations in the electronic medical record. Stakeholder input impacted the design of PediSICG to support clinicians in conducting ACP conversations.