Racial and ethnic minority families receive less family-centered care than their majority counterparts, resulting in disparities in treatment engagement and adverse child outcomes among children diagnosed with Autism Spectrum Disorder (Autism). Shared-decision making (SDM) increases family-centered care by identifying treatments that meet the needs and goals of the family, and increases engagement, adherence and outcomes. In the context of Autism, a valuable opportunity to engage families in SDM occurs at their first diagnostic encounter, where treatment options are initially discussed. The proposed stakeholder engaged T2 pilot project, draws upon qualitative and quantitative mixed methods to produce objective information about SDM in the context of Autism diagnosis and treatment. This innovative project will aim to identify key elements of SDM during initial diagnostic encounters, explore patient perspectives and the role of race/ethnicity, and investigate provider perspectives in their use of SDM with families. Through direct observation, measurement scales, and qualitative interviews, we will identify the frequency of SDM elements used between 30 parent-provider dyads, as well as information about family preferences, values, and treatment goals for children with Autism, and particularly how they vary by race/ethnicity. Knowledge gained from this foundational research will result in several translational funding opportunities for future SDM interventions: decision aids, provider/parent training, and care system redesign. Our ultimate goal is to increase the use of SDM in clinical practice to provide a system of care for Autism that more fully considers the preferences, values, and treatment goals of families, regardless of their racial/ethnic background.
- Parents: Mothers and fathers of children diagnosed with Autism, non-Hispanic white or Hispanic, parents of children between the ages of 2-10 years old who range in core symptoms/severity level, comorbidities, and intellectual capacity, and English speaking.
- Providers: Inclusion criteria: Must be a developmental behavioral pediatrician or fellow; must have experience diagnosing and treating Autism; and must be English speaking.
- Due to the difficulty of finding interpreters/translators for transcription and interview, non-English speakers, either parent or provider, will be excluded.
- Parents of children not receiving a diagnosis of Autism will be excluded.
Poviders who are involved in the diagnosis and treatment of autism spectrum disorder will be recruited to participate in the study. They must be willing to allow researchers to audio-record feedback sessions where they provide an autism diagnosis and discuss relevant treatment options with a family. They will be asked to allow 6 audio-recordings of their work with 3 white, non-Hispanic and 3 Hispanic families. At the conclusion of the audio-recordings they will be asked to complete a brief rating scale of their ability to engage in shared-decision making with their patients.
15 white, non-Hispanic and 15 Hispanic families of newly diagnosed children with autism will be recruited to participate in the study. They will be asked to allow the research team to audio-record their feedback session and participate in a follow up semi-structured interview 1 week post feedback session.