Using qualitative methods to guide scale development for anxiety in youth with autism spectrum disorder
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.
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Research has explored ways in which neurodivergent people have described their fit-for purpose, personal ways of coping with stress and distress.
“We can learn from research that has explored ways in which neurodivergent people have described their fit-for purpose, personal ways of coping with stress and distress (Young, 2012; Bearss et al., 2016; Petty et al., 2022).”
From Compassionate pedagogy for neurodiversity in higher education: A conceptual analysis (2023) · cites this paper as Bearss et al., 2016
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“In addition to the core features, meta-analysis, detailed reviews, and population-based studies indicate that 30%– 42% of youth with ASD also meet diagnostic criteria for an anxiety disorder (Simonoff et al., 2008; Van Steensel et al., 2011; White et al., 2009).”
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“In addition to the core features, meta-analysis, detailed reviews, and population-based studies indicate that 30%– 42% of youth with ASD also meet diagnostic criteria for an anxiety disorder (Simonoff et al., 2008; Van Steensel et al., 2011; White et al., 2009).”
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- Authors
- Bearss, K., Taylor, C. A., Aman, M. G., Whittemore, R., Lecavalier, L., Miller, J., Pritchett, J., Green, B., & Scahill, L.
- Affiliations
- Emory University (US)
- The Ohio State University (US)
- Yale University (US)
- University of Pennsylvania (US)
- Corresponding author
- Scahill, Lawrence
- ORCID
- Venue
- Autism
- Publisher
- SAGE Publications
- Published
- 2015-09-22
- Volume
- 20
- Issue
- 6
- Pages
- 663-672
- ISSN
- 1362-3613 (ISSN-L)
- 1461-7005
- OpenAlex
- W2291678689
- Cited by
- 88
- References
- 11
- Citations by year
- 2026: 5 · 2025: 10 · 2024: 6 · 2023: 13 · 2022: 9 · 2021: 16 · 2020: 9 · 2019: 6 · 2018: 7 · 2017: 4 · 2016: 3
- FWCI
- 2.80
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Autism (publishedVersion)
- PubMed (publishedVersion)
- Funders
- National Institute of Mental Health (R01MH099021)
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Social Sciences › Education › Health Education and Validation
- Social Sciences › Decision Sciences › Management Science and Operations Research › Psychometric Methodologies and Testing
- Keywords
- autism spectrum disorder, anxiety, youth, scale development, content validity, anxiety triggers, focus groups
- MeSH terms
- Autism Spectrum Disorder, Adolescent, Anxiety Disorders, Child, Child, Preschool, Evaluation Studies as Topic, Female, Humans, Male, Reproducibility of Results, Focus Groups
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