“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

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish (US)
JournalJournal of Autism and Developmental Disorders
DOIs
StateAccepted/In press - 2021

Keywords

  • Autism
  • Children
  • Decision-making
  • Health literacy
  • Mixed methods
  • Parents
  • Services use
  • United States

ASJC Scopus subject areas

  • Developmental and Educational Psychology

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