Using qualitative methods to guide scale development for anxiety in youth with autism spectrum disorder.
Parent focus groups produced 52 autism-specific anxiety items you can watch for field testing.
01Research in Context
What this study did
Bearss et al. (2016) ran focus groups with 48 parents of kids with autism. They asked what anxiety looks like at home, school, and in the community.
Parents gave 52 real-life examples. The team turned each example into a draft question for a new parent-rated anxiety scale.
What they found
The 52 draft items cover worries, physical signs, and behaviors that parents see every day. Items are worded in parent language, not clinic jargon.
The set is ready for the next step: testing if the questions measure anxiety reliably and if scores predict real distress.
How this fits with other research
Shawler et al. (2021) showed that standard social-anxiety scales already work well with verbally fluent autistic adults. Karen’s team starts earlier: they build a brand-new tool for youth who may not self-report.
Nah et al. (2018) used the short DASS-21 to screen autistic adults. Their study extends Karen’s youth focus to older ages and shows quick screens can flag half of clients.
Bakhtiari et al. (2021) found youth with autism can self-report if IQ is 80+ and attention is fair. Karen keeps parent report front and center, giving you a backup when self-report is shaky.
Why it matters
You now have a pool of autism-tuned anxiety items ready for field testing. Until the final scale arrives, borrow the parent language to sharpen your interview questions and build better operational definitions of anxious behavior.
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02At a glance
03Original abstract
Anxiety is common in youth with autism spectrum disorder. Despite this common co-occurrence, studies targeting anxiety in this population are hindered by the under-developed state of measures in youth with autism spectrum disorder. Content validity (the extent to which an instrument measures the domain of interest) and an instrument's relevance to the patient population are key components of measurement development. This article describes the application of qualitative research methods in the initial development of a parent-rated instrument of anxiety symptoms in youth with autism spectrum disorder. Overall, 48 parents of 45 children (aged 3-17 years) with autism spectrum disorder and at least mild anxiety participated in one of six focus groups at two sites (three groups per site). Systematic coding of the focus group transcripts identified broad themes reflecting the situations and events that trigger anxiety in children with autism spectrum disorder, the behavioral manifestations of anxiety in children with autism spectrum disorder, the parent and the child's own response to anxiety, and broad behavioral patterns that could be associated with anxiety. From the focus group data, investigators generated 52 candidate items for a parent-rating of anxiety in youth with autism spectrum disorder. This report provides a detailed description of these early steps in developing a patient-oriented outcome measure.
Autism : the international journal of research and practice, 2016 · doi:10.1177/1362361315601012