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Purpose <p>Individuals with Williams syndrome (WS) are disproportionately affected by anxiety. However, gaps remain in our knowledge of the clinical presentation and impact of anxiety in this population. The objectives of this study were to (1) better understand the phenomenology and impact of anxiety in this population without the constraints of standardized mental health diagnostic criteria, and (2) compare caregiver and participants with WS report of anxiety.</p> Methods <p>One-hundred caregivers and 79 individuals with WS participated in open-ended, semi-structured interviews designed to learn more about the symptoms, content, and impact of anxiety on individuals with WS. The interviews were analyzed using a six-step thematic analysis approach. McNemar’s test was performed to compare the frequency for which each code was reported by caregivers versus WS participants.</p> Results <p>Thematic analysis revealed five main themes: (1) observable signs of anxiety, (2) anxiety content, (3) interference of anxiety, (4) caregiver accommodation, and (5) response to anxiety. Caregivers were more likely to report all codes than participants with WS, with the exception of physical signs of anxiety.</p> Conclusion <p>This study provides a deeper understanding of common signs and symptoms of anxiety in individuals with WS, as well as the types of symptoms that are best ascertained through caregiver versus self-report.</p>

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Anxiety in Williams Syndrome: Qualitative Analysis of Caregiver and Individual Interviews

  • 期刊论文

  • 发表日期：

    2026年2月14日

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  • Robyn P. Thom,
  • Danielle Renzi,
  • Jennifer Mullett,
  • Kimaya R. Gracias,
  • Darren Chernicky,
  • Nick Freni,
  • David Eddie,
  • Marisa H. Fisher,
  • Kirstin Birtwell,
  • Caitlin Ravichandran,
  • Barbara Pober,
  • Christopher J. McDougle

摘要

Purpose

Individuals with Williams syndrome (WS) are disproportionately affected by anxiety. However, gaps remain in our knowledge of the clinical presentation and impact of anxiety in this population. The objectives of this study were to (1) better understand the phenomenology and impact of anxiety in this population without the constraints of standardized mental health diagnostic criteria, and (2) compare caregiver and participants with WS report of anxiety.

Methods

One-hundred caregivers and 79 individuals with WS participated in open-ended, semi-structured interviews designed to learn more about the symptoms, content, and impact of anxiety on individuals with WS. The interviews were analyzed using a six-step thematic analysis approach. McNemar’s test was performed to compare the frequency for which each code was reported by caregivers versus WS participants.

Results

Thematic analysis revealed five main themes: (1) observable signs of anxiety, (2) anxiety content, (3) interference of anxiety, (4) caregiver accommodation, and (5) response to anxiety. Caregivers were more likely to report all codes than participants with WS, with the exception of physical signs of anxiety.

Conclusion

This study provides a deeper understanding of common signs and symptoms of anxiety in individuals with WS, as well as the types of symptoms that are best ascertained through caregiver versus self-report.