Engaging Latino Families in ASD Treatment Research

Background:  Low-income and ethnic minority families continue to face critical disparities in access to diagnostic and treatment services for autism spectrum disorder (Begeer et al., 2009). Despite the growing cultural diversity of the United States, ethnic minority children and families continue to be substantially under-represented in ASD research (Norbury and Sparks, 2013), and particularly in treatment research (West et al., 2016). There are currently no published studies on adapting ASD treatment for children and families from Latino immigrant communities, with the exception of a parent advocacy intervention (Magaña et al., 2016).

Objectives:  To present an approach for adapting ASD treatment for Latino immigrant families, based on Rogers’ Diffusion of Innovation (DOI) framework and evaluate its efficacy in engaging these families in treatment research.

Methods:  The DOI framework identifies knowledge and persuasion as the first two stages in adoption of innovation. We targeted these two stages through steps taken to build awareness (knowledge), minimize complexity of the intervention (persuasion), increase the intervention’s cultural compatibility with families (persuasion), and address issues of relative advantage and observability (persuasion). Research staff worked collaboratively with a stakeholder advisory board to adapt treatment manuals and strategies. Participants included 174 children and their parents drawn from 3^rd through 5^th grade in Title I schools in the DC metropolitan area. All participants met research criteria for either ASD or ADHD, though many had no prior clinical diagnosis. Treatment acceptability was assessed via parent attendance at trainings and a feedback questionnaire.

Results:  Group differences were assessed using one-way ANOVA, using the FDR procedure to control for multiple comparisons. Latino families had significantly lower income (F=11.30, p=.001) and years of parent education (F=11.72, p=.001), which have been shown to predict lower engagement in research and treatment. Despite these barriers, Latino families attended the same number of trainings on average as other families (F=2.42, ns). Moreover, Latino families reported higher satisfaction with the program (F=17.56, p<.0001) and greater comfort with the skills (F=18.20, p<.0001) than other ethnic groups. Latino families also reported finding the manual more helpful, although this did not survive corrections for multiple testing.

Conclusions:

The strategies utilized in this study and pragmatic adaptations made over the course of the trial highlight the need for a thoughtful and flexible approach to working with low-income and ethnic minority families in community-based clinical research. Using these strategies, our team enabled high levels of engagement from Latino families who faced significant barriers to participation, outpacing all other ethnic groups in the study. Researchers need to take additional steps to build community trust and relationships in order to successfully recruit and retain participants in their studies. Researchers must be willing and able to invest more time at the beginning of their studies to involve community stakeholders in the process, establish trust within communities, and make changes to usual procedures in order to meet the needs of underserved families.