Parent perspectives in shared decision-making for children with medical complexity.

Abstract Objective Shared decision-making (SDM) may improve outcomes for children with medical complexity (CMC). CMC have lower rates of SDM than other children, but little is known about how to improve SDM for CMC. The objective of this study is to describe parent perspectives of SDM for CMC and identify opportunities to improve elements of SDM specific to this vulnerable population. Methods Interviews with parents of CMC explored SDM preferences and experiences. Eligible parents were ≥18 years old, English- or Spanish-speaking, with a CMC Results We conducted interviews with 32 parents (27 in English, mean parent age 34 years, SD=7; mean child age 4 years, SD=4; 50% with household income Conclusion Our results provide insight into parent experiences with SDM for CMC. We identified unique opportunities to improve SDM for CMC that will inform future research and interventions to improve SDM for CMC.