Parent Perspectives in Shared Decision-Making for Children With Medical Complexity

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 <12 years old. Interviews were recorded, transcribed, and analyzed by independent coders for shared themes using modified grounded theory. Codes were developed using an iterative process, beginning with open-coding of a subset of transcripts followed by discussion with all team members, and distillation into preliminary codes. Subsequent coding reviews were conducted until no new themes emerged and existing themes were fully explored. Results: We conducted interviews with 32 parents (27 in English, mean parent age 34 years, standard deviation = 7; mean child age 4 years, standard deviation = 4; 50% with household income <$50,000, 47% with low health literacy) in inpatient and outpatient settings. Three categories of themes emerged: participant, knowledge, and context. Key opportunities to improve SDM included: providing a shared decision timeline, purposefully integrating patient preferences and values, and addressing uncertainty in decisions. 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.