A Survey of Information Source Preferences of Parents of Individuals with Autism Spectrum Disorder
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For parents of children with an Autism spectrum disorder (ASD), high quality, easily accessible information and a strong peer network can be the key to raising a happy, healthy child, and maintaining family well-being and emotional resilience. This article reports the findings of an anonymous survey examining the information source preferences for 935 parents of individuals with ASDs in North Carolina. Data indicates that parents show similar information seeking patterns across the age spectrum, that availability of information (as indicated by overall information source selection) decrease as children age. It also shows that parents rely heavily on local sources of information, preferring them to nonlocal sources (such as the internet) for many types of information.
KeywordsAutistic disorder Family Information seeking behavior parents Social support TEACCH
The authors would like to thank the parents who took precious time to share their thoughts with us. We would also like to thank members of the North Carolina Autism Alliance, the North Carolina Autism Society, and the Carolina Institute for Developmental Disabilities for their guidance with study design, and assistance with recruiting participants for this study. Participants were recruited from the Carolina Institute for Developmental Disabilities Research Participant Registry which is funded by NICHD U54HD079124. Brief preliminary findings from this study were presented at the 2015 ASIS&T Annual Meeting: Information Science with Impact: Research in and for the Community in St. Louis, Missouri.
AG conceived of, designed, and coordinated the study, performed the measurements and statistical analyses, interpreted the data, and drafted the manuscript. SK participated in the design and coordination of the study, acquisition and interpretation of the data, and helped revise the manuscript. EV participated in the acquisition and interpretation of the data, and helped revise the manuscript. All authors read and approved the final manuscript.
Compliance with Ethical Standards
Conflict of interest
The authors declare that they have no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
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