Abstract
Little is known about how parent health literacy contributes to health-related outcomes for children with autism. This mixed-methods study included 82 U.S. parents of a child with autism 2–5 years-old and sought to describe (1) health literacy dimensions, (2) how health literacy influences services use, and (3) health literacy improvement strategies. Results showed: autism information was accessed from multiple sources; understanding autism information involved “doing your own research”; autism information empowered decision-making; health literacy facilitated behavioral services use; health literacy influenced medication use; family and system characteristics also affected services use; autism education remains needed; services information is needed across the diagnostic odyssey; and greater scientific information accessibility would increase uptake. Findings demonstrate how parent health literacy affects services use.
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Funding
This research was supported by Autism Speaks and cooperative agreement UA3 MC11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. This work was conducted through the Autism Speaks Autism Treatment Network. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, the U.S. Government, or Autism Speaks. This work was conducted through the Autism Speaks Autism Treatment Network serving as the Autism Intervention Research Network on Physical Health. Dr. Lindly’s effort was also supported by grant # T32HS000063 from the Agency for Healthcare Research and Quality and the Southwest Health Equity Research Collaborative at Northern Arizona University (Grant No. U54MD012388), which is sponsored by the National Institute on Minority Health and Health Disparities (NIMHD).
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Kamila B. Mistry and Karen A. Kuhlthau are co-senior authors.
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Lindly, O.J., Cabral, J., Mohammed, R. et al. “I Don’t Do Much Without Researching Things Myself”: A Mixed Methods Study Exploring the Role of Parent Health Literacy in Autism Services Use for Young Children. J Autism Dev Disord 52, 3598–3611 (2022). https://doi.org/10.1007/s10803-021-05240-0
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DOI: https://doi.org/10.1007/s10803-021-05240-0