Neuroimaging research with diverse children with ASD: Impact of a social story on parent understanding and likelihood of participation

Abstract

BackgroundThe successful inclusion of youth with autism spectrum disorder (ASD) in neuroimaging research is imperative for advancing our understanding of the neurobiological underpinnings of ASD. In order to generate knowledge that is representative of all affected youth, it is essential to include participants who are culturally and linguistically diverse. However, these families often face barriers to participation in neuroimaging research, including distrust and limited knowledge about research, above and beyond any challenges associated with ASD (e.g., behaviors, sensory hypersensitivities). MethodThis study included a diverse group of Spanish- and English-speaking parents of children with ASD (N = 79) to examine the impact of a social story on (a) their understanding of EEG study procedures and (b) their likelihood to enroll in a neuroimaging study. ResultsBoth English- and Spanish-speaking parents who viewed a social story demonstrated better understanding of EEG procedures than parents who read a written explanation, with Spanish-speaking parents also perceiving their understanding to be better in the social story condition. Although parents who viewed a social story were not more likely to participate in neuroimaging research than parents who read a written description, they were less likely to indicate needing more information and more likely to cite their child’s specific behavior problems as the rationale for unlikelihood to participate. ConclusionThese results suggest that social stories may be effective tools in the informed consent process for promoting parent understanding of neuroimaging procedures, and useful during recruitment to aid parents in determining whether their child with ASD will be successful in a neuroimaging study.