Lessons learned: Engaging culturally diverse families in neurodevelopmental disorders intervention research.
Allison B Ratto, Bruno J Anthony, Cara Pugliese and 8 others
PMID 27313190WHAT IT FOUND
Engaging low-income Latino families in autism and ADHD research required shifting from clinic-based to school-based delivery, replacing lectures with small-group discussions, and hiring a bilingual community navigator.
Flexible scheduling, Spanish text messaging, and joint questionnaire completion were essential for retention.
Key findings
01School-based delivery by trained staff reduced access barriers for low-income families who lacked clinic resources.
02A bilingual family navigator from the community was critical for building trust and supporting families who could not attend group sessions.
03Standard lecture formats failed; small-group discussions and phone-based individual support improved engagement for families with limited English or time.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
This is a description of engagement strategies and lessons learned from a trial, not a report of the trial's clinical outcomes or efficacy. The paper does not provide quantitative data on how these adaptations specifically affected retention rates compared to a control group of families who did not receive these adaptations. The findings are specific to the Washington, DC metropolitan area and may not generalize to other regions or populations. The paper notes that many families were unfamiliar with research concepts, which may have influenced how they responded to engagement strategies.
Declared interests
The study was funded by the Patient-Centered Outcomes Research Institute (PCORI). The authors declare that stakeholders were involved in the design and implementation. No other conflicts of interest are explicitly stated in the provided text.
The easy way to misread this
Do not interpret this paper as evidence that these engagement strategies improve clinical outcomes for children with ASD or ADHD. It describes how researchers recruited and retained families, not whether the interventions worked. The contribution of specific adaptations to retention cannot be separated from other factors.