Providers of children with autism spectrum disorder (hereafter “autism”) report higher levels of shared decision-making during initial diagnostic and treatment planning visits than observed. The goal of this study was to qualitatively explore this discrepancy by investigating provider perceptions of the parent-provider decision-making process in early treatment planning and the role for parents in this process.
We conducted semistructured qualitative interviews with developmental behavioral pediatricians (DBPs; n = 15) to investigate how they approach early treatment planning with parents. We analyzed participant characteristics using descriptive statistics. Interviews were audio-recorded, transcribed, and independently coded by 2 researchers until consensus was reached. Analyses were conducted using a modified grounded theory framework.
DBPs reported that their primary role during early treatment planning was to provide diagnostic clarification and that parents' primary role was to learn as much as they can about autism. Most DBPs wanted treatment planning to be collaborative, and perceived that parents had the same preference but might not have the knowledge or skills to effectively participate. DBPs identified additional barriers that influence the extent to which they engage parents in the collaborative decision-making and provided recommendations for enhancing the process.
DBPs are proponents of collaborative treatment planning between parents and providers; however, there are many obstacles that prevent this. Strategies such as decision tools or aids and larger systemic reforms are necessary to support DBPs and parents in this process.