Brief Report: Positive Caregiver Perceptions on Receiving Research Summary Reports in Autism Longitudinal Research.

Abstract

Purpose: Although participating in research is often presented as something that can 'help others in the future', research participants may also benefit from accessing and understanding their own research data. However, participant attitudes toward receiving individual data via research reports are under researched. This study examined participant perceptions of research reports within the context of the pilot phase of the Pediatric Autism Research Cohort (PARC) Study. PARC Study participants included caregivers of children with a recent diagnosis of autism, completing questionnaires on their child's symptoms and behaviours at six-month intervals for two years. Following completion of each timepoint, participants received a research summary report with information on their own child's developmental progress. Participants were invited to give feedback on their use of the reports after the pilot study.

Methods: An online questionnaire developed by the PARC Study research team to assess the use of PARC Study research summary reports was emailed to participants who received a report. Responses to the questionnaire (n = 39) were evaluated using descriptive analyses.

Results: Most participants reported that the reports improved their knowledge of autism and management/awareness of their child's needs. Reports were shared with professionals, leading to opportunities for dialogue and shared decision-making around intervention, social, and educational goals. Overall, participants expressed a preference for receiving such reports.

Conclusions: This work demonstrates positive perceptions and experiences with using research summary reports among participants in autism research. The provision of feedback/summary reports can enrich participant knowledge and serve as a resource to open dialogue with professionals.