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Brief Report: Positive Caregiver Perceptions on Receiving Research Summary Reports in Autism Longitudinal Research
Elysa Eliopulos1, Laura de la Roche2, Yun-Ju Chen3,4
1Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, ON, Canada. elysaelio@gmail.com.
Journal of Autism and Developmental Disorders
|November 9, 2024
Summary
Caregivers of children with autism found research reports beneficial, improving their understanding of their child's needs and facilitating communication with professionals. Participants preferred receiving these personalized research summaries.
Area of Science:
- Pediatric research
- Autism spectrum disorder research
- Patient engagement in research
Background:
- Research participation often emphasizes future benefits, overlooking direct participant advantages.
- Understanding participant attitudes towards receiving individual research data is underexplored.
- The Pediatric Autism Research Cohort (PARC) Study provided caregivers with personalized progress reports.
Purpose of the Study:
- To examine caregiver perceptions of research summary reports in autism research.
- To assess the utility and impact of individualized data feedback for participants.
- To inform best practices for participant engagement and data sharing in research.
Main Methods:
- An online questionnaire was developed to evaluate the use of PARC Study research summary reports.
- 39 participants who received research reports completed the questionnaire.
- Descriptive analyses were used to evaluate the responses.
Main Results:
- Most participants reported increased knowledge of autism and improved management of their child's needs.
- Reports facilitated dialogue with professionals regarding intervention and educational goals.
- Participants expressed a preference for receiving these research summary reports.
Conclusions:
- Autism research participants have positive perceptions of receiving research summary reports.
- Personalized feedback reports enhance participant knowledge and support professional collaboration.
- Providing research data summaries can empower participants and improve the research experience.
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