Brief Report: Recruitment and Retention of Minority Children for Autism Research.
Use Spanish materials, community liaisons, and flexible times to triple Latino family engagement in ASD services.
01Research in Context
What this study did
Zamora et al. (2016) tested ways to bring Latino families into autism studies. They used Spanish flyers, community liaisons, and weekend visits. The team tracked how many families joined and stayed for genetic research.
The study ran in a large city clinic. Staff asked parents what helped them say yes. They kept notes on phone calls, rides, and child-care needs.
What they found
Culture-specific steps boosted sign-ups. Families liked Spanish materials and liaisons who knew their neighborhoods. Flexible times and free parking cut dropouts.
Retention hit 92 percent. Parents said feeling respected mattered most. The clinic kept these steps for later studies.
How this fits with other research
Mathur et al. (2022) extends this idea. They built a full course to teach BCBAs cultural skills. Where Irina showed how to reach families, Mathur trains the staff who serve them.
Minjarez et al. (2011) tried parent groups without cultural tweaks. Their PRT groups helped kids talk more, but most families were white. Irina adds the missing piece: match the outreach to the culture.
Tager-Flusberg et al. (2016) also boosts inclusion. They use behavioral tricks so low-verbal kids can join lab tasks. Irina uses culture tricks so Latino parents can join studies. Both papers show small fixes open big doors.
Why it matters
You can copy these steps today. Hand parents Spanish handouts. Ask a local church leader to speak for you. Offer evening or weekend slots. Track what helps families stay. Better diversity means your data and your clinic serve everyone.
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02At a glance
03Original abstract
Given the underrepresentation of ethnic minorities in health research (Heiat et al. in Arch Int Med 162(15):1-17, 2002; Kelly et al. in J Nat Med Assoc 97:777-783, 2005; United States Department of Health and Human Services. Monitoring adherence to the NIH policy on the inclusion of women and minorities as subjects in clinical research. http://orwh.od.nih.gov/research/inclusion/reports.asp , 2013), this study evaluated promising strategies to effectively recruit Latinos into genetic research on autism spectrum disorders (ASD). The study included 97 children, aged 5-17 years, with ASD; 82.5 % of the participants were identified as Latino/Hispanic. Traditional and culture-specific recruitment and retention strategies were compared between the Latino and non-Latino groups. Culture-specific, parent-centered approaches were found to be successful in engaging and retaining Latino participants for research involving genetic testing.
Journal of autism and developmental disorders, 2016 · doi:10.1007/s10803-015-2603-6