"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

Olivia J Lindly; Jacqueline Cabral; Ruqayah Mohammed; Ivonne Garber; Kamila B Mistry; Karen A Kuhlthau

doi:10.1007/s10803-021-05240-0

"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. 2022 Aug;52(8):3598-3611. doi: 10.1007/s10803-021-05240-0. Epub 2021 Aug 25.

Authors

Olivia J Lindly^{1

2

3}, Jacqueline Cabral^{4

5}, Ruqayah Mohammed^{4

6}, Ivonne Garber⁷, Kamila B Mistry⁸, Karen A Kuhlthau^{4

9}

Affiliations

¹ Division of Pediatric Health Outcomes Research, Massachusetts General Hospital, 125 Nashua Street, Suite 840, Boston, MA, 02114, USA. [email protected].
² Department of Pediatrics, Harvard Medical School, 25 Shattuck Street, Boston, MA, 02115, USA. [email protected].
³ Department of Health Sciences, Northern Arizona University, 1100 S. Beaver Street, Room 488, Flagstaff, AZ, 86011, USA. [email protected].
⁴ Division of Pediatric Health Outcomes Research, Massachusetts General Hospital, 125 Nashua Street, Suite 840, Boston, MA, 02114, USA.
⁵ Memorial Sloan Kettering Cancer Center, 1275 York Avenue, New York, NY, 10065, USA.
⁶ Massachusetts College of Pharmacy and Health Sciences, 179 Longwood Avenue, Boston, MA, 02115, USA.
⁷ Department of Health Sciences, Northern Arizona University, 1100 S. Beaver Street, Room 488, Flagstaff, AZ, 86011, USA.
⁸ Agency for Healthcare Research and Quality, 5600 Fishers Lane, Rockville, MD, 20857, USA.
⁹ Department of Pediatrics, Harvard Medical School, 25 Shattuck Street, Boston, MA, 02115, USA.

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.

Keywords: Autism; Children; Decision-making; Health literacy; Mixed methods; Parents; Services use; United States.

MeSH terms

Autism Spectrum Disorder*
Autistic Disorder* / diagnosis
Autistic Disorder* / therapy
Child
Child, Preschool
Educational Status
Health Literacy*
Humans
Parents / education

Abstract

MeSH terms

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