"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 and 3 others
PMID 34435270WHAT IT FOUND
Parents of children with autism rarely rely on a single source of information.
They actively cross-check advice from doctors, the internet, and other parents, often prioritizing their own research over clinical recommendations. Financial barriers and insurance confusion significantly hinder access to services.
Key findings
01Health literacy level was not statistically significantly associated with autism services use in survey results.
02Parents frequently used multiple sources, including the internet and word-of-mouth, to evaluate services and often relied on observing their child's response.
03Financial barriers and limited provider availability were noted by many parents as substantial obstacles to accessing services.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The sample was relatively small and self-selected from an existing research cohort, which limits generalizability. Participants who completed both the survey and focus group were more likely to have adequate health literacy than those who only completed the survey, potentially biasing the qualitative themes. The study was largely qualitative, so it describes experiences rather than proving causal effects of health literacy on service use. Health literacy was measured using the Newest Vital Sign, which is a brief screening tool and may not capture the full range of health literacy dimensions.
Declared interests
The authors have no relevant financial or non-financial interests to disclose.
The easy way to misread this
Do not conclude that health literacy has no impact on service access. The survey found no statistical association, but qualitative data showed that parents with limited health literacy faced greater difficulties understanding insurance costs, which acted as a barrier. The lack of statistical significance may reflect the small sample size and the complex interplay of other factors like provider availability.