Facilitators and Barriers of Advance Care Planning Discussions with Adolescents, Young Adults, and Parents of Children with Serious Illness (RP403)

Objectives: Describe the advance care planning communication preferences of children and adolescents and young adults (AYAs) with serious illness and their families. Describe multidisciplinary clinicians' current approach to advance care planning communication as well as perceived facilitators and barriers to initiating advance care planning discussions with AYAs and parents of children with serious illness. Discuss opportunities for further research to improve advance care planning communication for children and AYAs with serious illness and their families.

Importance: Parents desire earlier and more opportunities for advance care planning (ACP); however, large scale adoption of ACP for seriously ill children and AYAs remains unrealized. Little is known about the perceived facilitators and barriers of ACP discussions. Objective(s). To explore multidisciplinary clinician perceptions about typical approaches and perceived facilitators and barriers to ACP discussions.

Method(s): Semi-structured focus groups and individual interviews were conducted with multidisciplinary clinicians at two centers from December 2018-April 2019. An interdisciplinary three-person team then conducted thematic analysis incorporating both prefigured and emergent codes. Through an iterative process, a comprehensive coding structure was created, and each transcript coded independently by two coders with the third serving as an adjudicator, achieving high interrater reliability (kappa>0.85). Utilizing grounded theory and framework analysis, we present findings related to clinician perceptions about current approaches to ACP, and facilitators and barriers to ACP discussions.

Results: The sample included 35 stakeholders including physicians, nurses, psychosocial clinicians, and chaplains. Overall, providers valued facilitating ACP conversations with patients and their families and aimed to do so by supporting, empowering, and establishing trust. Providers prioritized understanding family dynamics, establishing goals of care, and delineating the overall disease trajectory in ACP discussions. However, various factors impeded ACP discussions. Primary clinician-level barriers included limited communication skills, prognostic uncertainty, competing demands, and conflicting messaging associated with multidisciplinary team care, while perceived patient and family-level barriers included poor prognostic awareness, avoidance, complex patient/family dynamics, and the influence of culture and religion. Clinicians identified alignment with the patient's primary team and normalization as facilitators of ACP discussions.

Conclusion(s): Despite ubiquitous recognition of the importance of ACP communication, various clinicianand parent-level barriers were identified that do not meet the needs of children and AYAs with serious illness and their families. Impact. Improvement strategies should prioritize serious illness communication interventions to facilitate ACP and ensure care is aligned with patient and family goals and values.