Parent Perspectives on Participating in Intervention Research with Their High-Risk Toddler

Background: The research community is increasingly using randomized-controlled trials (RCT) with high-risk (HR) siblings of children with autism spectrum disorder (ASD) to examine the extent to which early intervention ameliorates ASD symptomatology. However, to date, few studies have solicited parents’ perspectives regarding their decisions and experiences related to participating in intervention research with their HR toddlers. Understanding the perceptions of stakeholders (i.e., parents) who participate in research, often before ASD symptoms have emerged, will provide valuable information regarding best practices related to research with HR toddlers.

Objectives: To understand parents’: 1) motivation to participate in and experience during intervention research with their HR toddler; and 2) opinion about the conceptualization of providing preventative intervention to HR toddlers.

Methods: Parents enrolled in an RCT examining the efficacy of ImPACT, a parent-mediated social communication intervention, were invited to participate in an interview regarding their experiences in this study. Consenting parents assigned to both the intervention and control groups completed a semi-structured interview at time points corresponding to 3 or 6 months after the intervention group completed the 12-week intervention. Interviewers and coders were independent of the main study. Parents were asked about what motivated them to participate in the study, their experience participating in the study, and what they think about the concept of intervention or prevention for HR toddlers. All interviews were recorded, transcribed and checked for accuracy. Grounded theory and mixed method analysis were used. Data collection is ongoing.

Results: Preliminary results are presented for parents in the intervention (n=9) and control group (n=5) who completed interviews. Categories and subcategories of responses were generated using grounded theory (Table 1). Parents from both groups felt positively about their group assignment and were motivated to enroll in the study to track their child’s development. Fewer than half reported being concerned about their child’s development at the time of enrollment. Both groups felt that the assessment process was educational, either because it enabled them to monitor their child’s progress or because they learned about interacting with their child based on the assessor’s style. When asked about the concept of preventative research, approximately 20% of parents described feeling torn between not wanting to change their child with ASD or wanting to prevent challenges associated with ASD.

Conclusions: This study revealed novel information related to parents’ decisions to enroll in research with their HR toddler, their experience participating in research, and their perceptions about preventative research. Of particular note is that not all parents were concerned about their child’s development when enrolling, and that parents in both groups were satisfied with their group assignments. These results emphasize that though parents are enrolling in an RCT which includes an intervention condition, many parents may be motivated and satisfied by assessments offered. Results also suggest that a minority of parents feel conflicted about preventative interventions as it relates to their older child. This information has implications for future HR studies, both for understanding what motivates parents to participate in research and for conceptualization of these projects.