Project Description:
Problem: Children with Down Syndrome (DS) who are Black, Indigenous, Hispanic/Latino, Asian, and other individuals of color, face systemic racism, which may impact their access to health care and the quality of their developmental and behavioral health interventions. The voices of communities of color are absent in speech-language intervention design, implementation, and evaluation, which results in weaker, inadequate, and culturally misaligned interventions. There is a critical need to explore the experiences of children with DS and their families of color because existing speech-language interventions may require adaptations to be feasible, acceptable, and effective for all families Problem: Children with Down Syndrome (DS) who are Black, Indigenous, Hispanic/Latino, Asian, and other individuals of color, face systemic racism, which may impact their access to health care and the quality of their developmental and behavioral health interventions. The voices of communities of color are absent in speech-language intervention design, implementation, and evaluation, which results in weaker, inadequate, and culturally misaligned interventions. There is a critical need to explore the experiences of children with DS and their families of color because existing speech-language interventions may require adaptations to be feasible, acceptable, and effective for all families Solution: It is vital to strengthen relationships between our research team and parents of children with DS who face systemic racism. Understanding the lived experiences of children of color with DS, and their families, can increase the feasibility and acceptability of the language intervention, which is crucial since many minoritized groups are underrepresented in language intervention research. We need strong partnerships to identify access barriers to speech-language therapy, exacerbated by the COVID-19 pandemic, and to develop interventions responsive to the needs of families of color. To accomplish this, our research team will identify sustainable, culturally sensitive pathways for engaging with families of color living with DS. Objectives: My goal is to develop collaborative, sustained partnerships with community stakeholders of color (parents of children with DS, patient-advocates, health care providers) and engage them in the design, implementation, and dissemination of our research. This work will address systemic racism in DS language intervention research through two specific objectives: (1) Assemble a community advisory council (CAC) composed of parents of children with DS and health care providers who are Black, Indigenous, Hispanic/Latino, Asian, and other individuals of color to meet quarterly in person or online to discuss how the research program can better serve communities of color and engage more participants in DS research, and (2) Conduct a community engagement studio (CES) with caregivers who are Black, Indigenous, Hispanic/Latino, Asian, and other people of color to (a) solicit their input on proposed research prior to implementation and (b) collaborate on the design, implementation and evaluation of the intervention.
Unserved or Under-served Populations:
Racial or Ethnic Minorities, Limited English, Geographic Areas, Rural/Remote, Specific Groups
