The Impact of Social Stories on Neuroscience Research in ASD: A Qualitative Study of Parents’ Perspectives

Background: Neuroscience research has provided helpful information about mechanisms underlying the development of ASD. Although neuroscience research provides pivotal findings, recruiting ethnically diverse participants presents a challenge. Research on participant perspectives suggests that minority individuals report high levels of distrust and limited knowledge about the risks and benefits of research³. Studies have shown that using social stories that describe steps about new situations may decrease stress in children with ASD^1,2. However, the impact of social stories in parents of children with ASD is unknown. This study explored the effect of a social story on parents’ willingness to bring their child with ASD to participate in neuroscience research.

Objectives:

1. What were the reasons parents reported for being willing/unwilling to bring their child to participate in neuroscience research?
   • Did these reasons, given at pre-test, differ between English and Spanish-speaking parents?
2. What were the reasons that parents reported for change from pre to post-test?
   • Did reasons given differ based on condition (presentation of the information)?
   • Did participation willingness at post-test differ between English and Spanish-speaking parents?

Methods: Eighty parents (43 Spanish-speaking, 37 English-speaking) of children with ASD participated in an online survey. Parents were randomly assigned to one of two conditions: the social story condition (N=39), illustrating a child participating in an EEG study, or the read condition (N=41), where they read a description of the EEG process. Before presenting conditions, parents provided reasons for willingness/unwillingness to participate. After seeing the social story or reading the description (post-test), parents reported whether their willingness/unwillingness had changed and if so, were asked to elaborate on the reasons.

Results: At pre-test, a one-way ANOVA on willingness was conducted between Spanish and English-speaking parents. No significant differences were observed (p=.66). At post-test, the same ANOVA was run. No significant differences were observed (p = .18). Qualitative themes of willingness/unwillingness were analyzed at pre-test (Table 1). Of the 80 participants, 13 parents reported reasons for change (Table 2). Fifty-seven participants reported no change. Thirty-five parents remained willing to participate at post-test (social story N=20, read N=15), while 22 remained unwilling (social story N=11, read N=11).

Major themes differed across conditions. In the social story condition, change in willingness was in response to the type of study, whereas unwillingness was in response to child’s behaviors and child previously completing an EEG. In the read condition, change in willingness was in response to the procedure being noninvasive and for advancing ASD research, whereas unwillingness was in response to: child’s behaviors, needing more information, safety concerns, child’s willingness, time commitment, or other.

Conclusions: Social stories may be a useful recruitment strategy to help parents better understand procedures associated with neuroscience research. In the social story condition, parents did not report needing more information or safety concerns about participating when compared to the read condition. Moreover, no differences in willingness to participate were found between English and Spanish-speaking families for pre or post-test. Thus, social stories may be an effective way to provide more information about neuroscience research to ethnically diverse populations.