Peer-reviewed article
2240 Shared decision making in child health: A qualitative study of parents of children with medical complexity
Lin J, Clark C, Halpern-Felsher B, Sanders L ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This qualitative study interviewed 31 parents of children with medical complexity (chronic conditions affecting less than 5% of children but consuming over 40% of pediatric spending) to understand their preferences for shared decision-making with healthcare providers. The researchers identified key factors that influence decision quality, including parental concerns about uncertainty in their child's future, communication conflicts with providers, health system barriers, parent agency, and information sources. The study found that shared decision-making in this context has unique components distinct from other pediatric settings. These findings aim to inform future interventions to improve how parents and providers make health decisions together for complex cases.
Key points
- Children with medical complexity represent less than 5% of the pediatric population but account for over 40% of pediatric spending
- Parents identified concerns about uncertainty regarding their child's life trajectory as a key factor in decision-making
- Conflict during parent-provider communication was a barrier to effective shared decision-making
- Health system factors such as provider schedules affected parents' ability to participate in decisions
- The study identified specific, unique components of shared decision-making relevant to children with medical complexity
Limitations
This is a qualitative study based on interviews with parents in US settings, so findings may not be generalizable to other healthcare systems or cultural contexts. The study does not evaluate the effectiveness of any intervention to improve shared decision-making, only describes parent preferences and experiences.
Abstract
OBJECTIVES/SPECIFIC AIMS: Children with medical complexity (CMC) comprise less than 5% of the pediatric population and over 40% of pediatric spending, yet receive poorer quality health care compared with other children. The American Academy of Pediatrics recently identified shared decision making (SDM) as a key quality indicator for CMC, but there is no consensus model for SDM in CMC. Objective: To create a model of SDM from perspectives of parents of CMC. METHODS/STUDY POPULATION: Interviews with parents of CMC explored SDM preferences and experiences. Eligible parents were ≥18 years old, English-speaking or Spanish-speaking, with a CMC <12 years old. Interviews were recorded, transcribed, and analyzed by 3 independent coders for shared themes using grounded theory. RESULTS/ANTICIPATED RESULTS: Interviews were with 31 parents [26 English speakers, median parent age 33 years (SD 11), median child age 3 years (SD 3.6)] in inpatient and outpatient settings. We identified specific, unique components of SDM that affect decision quality, the alignment of a decision with the parent’s preferences and values. Themes included: concerns about uncertainty of the child’s life trajectory, conflict during parent-provider communication, health system factors such as provider schedule; parent agency, and the influence of the source of information. DISCUSSION/SIGNIFICANCE OF IMPACT: Our findings provide specific components of SDM unique to CMC that can inform future research and interventions to support SDM for parents and providers of CMC.