Parent Understanding of EEG Study Procedures for Culturally and Linguistically Diverse Children with ASD: Impact of a Social Story

Background: The successful inclusion of children with autism spectrum disorder (ASD) in neuroimaging research poses unique challenges due to associated behavioral and communication deficits ^1-3. Children from linguistically and culturally diverse backgrounds face additional barriers to participation, one of which may be parent understanding of research procedures, a critical aspect of informed consent and assent processes ^4-10. Although limited, some research supports multimedia approaches to improving parent and child understanding of study participation ¹¹. Here, we assessed the effectiveness of social stories, visual aids frequently employed to support learning and understanding for children with ASD ^12-14, for improving parent understanding of EEG procedures for culturally and linguistically inclusive research targeting children with ASD.

Objectives: The research questions are as follows:

1. Do parents have a better understanding of EEG study procedures after viewing a social story than after reading a traditional explanation in text format?
2. Does the social story impact parent understanding differently for English and Spanish speakers?

Methods: Participants were 83 English- or Spanish-speaking parents of children with ASD (see Table 1) who completed an anonymous online survey. Participants were randomly assigned to either (a) social story condition (photographs of a child volunteer completing the EEG study procedures accompanied by short text explanations) or (b) written condition (written explanation of study procedures intended to mirror what would typically be provided verbally and/or in writing during consent). Parents’ measured understanding (two multiple choice questions about study procedures) and perceived understanding (“After what you just read/saw, did it increase or decrease your understanding of brain research?”) were then assessed.

Results: Independent samples T-Tests revealed significant differences between groups in both measured understanding (p < .001) and perceived understanding (p = .024). A 2 (condition) x 2 (language) ANOVA revealed a significant interaction between condition and language (p < .001) for perceived understanding, but no significant interaction (p = .220) between condition and language for measured understanding (see Table 2). Findings suggest that only Spanish speakers perceived their understanding to be better in the social story condition versus the control condition. However, both language groups’ measured understanding was better in the social story condition.

Conclusions: Both English- and Spanish-speaking parents of children with ASD who saw a social story demonstrated better understanding of the EEG study procedures than parents who read a written explanation. Further, Spanish-speaking parents’ perception of their understanding was significantly higher in the social story condition. These results have implications for the informed consent process and recruitment, suggesting that social stories may be a feasible, cost-effective method for promoting parent understanding of child EEG research study procedures across culturally and linguistically diverse populations. If parents have a better understanding of children’s neuroimaging studies, they may feel more comfortable participating, asking questions, and answering their child’s questions, which could result in both parents and children having a more positive, successful experience with neuroimaging research studies.