The spectrum of communication abilities in children with 12 rare neurodevelopmental disorders: a qualitative study with caregivers
Caregivers offered a detailed and nuanced picture of their child's day-to-day communication. There was a considerable overlap between the communication concepts discussed by caregivers in the interviews and the existing conceptual model of communication ability. Some newly identified concepts underscore the need for further adaptation of the model and subsequent validation of any clinical outcome assessment before communication ability can be confidently measured for these individuals in clinical trials.
Authors
- Harrison N. Jones (ORCID: https://orcid.org/0000-0002-4171-980X)
- Charlene Son Rigby (ORCID: https://orcid.org/0000-0001-8627-996X)
- Kimberly Stephens (ORCID: https://orcid.org/0000-0002-8822-0547)
- Karen L. Beatty
- Geraldine Bliss (ORCID: https://orcid.org/0000-0002-8552-9856)
- Kerry Worth
- J. Michael Graglia
- Elika Bergelson (ORCID: https://orcid.org/0000-0003-2742-4797)
- Molly McFatrich (ORCID: https://orcid.org/0000-0001-5202-0335)
- Michael P. Thelen (ORCID: https://orcid.org/0000-0002-2479-5480)
- Terry Jo Bichell (ORCID: https://orcid.org/0000-0002-1055-4993)
- Brooke Short (ORCID: https://orcid.org/0000-0001-5773-5508)
- Bryce B. Reeve (ORCID: https://orcid.org/0000-0002-6709-8714)
- Christal G. Delagrammatikas (ORCID: https://orcid.org/0009-0000-0026-8734)
- Leah Schust Myers
- Nicole Lucas (ORCID: https://orcid.org/0000-0002-6326-4922)
- Kelly Gordon
- Christina K. Zigler (ORCID: https://orcid.org/0000-0002-8996-7757)
- James Goss (ORCID: https://orcid.org/0000-0002-7376-8059)
- Jennifer Kern
- Kate Plyler
- Haley O. Oyler (ORCID: https://orcid.org/0009-0000-7448-9986)
- Dandan Chen (ORCID: https://orcid.org/0000-0003-1936-080X)
- Li Lin (ORCID: https://orcid.org/0000-0003-0530-185X)
- Kate Still
- Brian J. Bigelow
- Nuala Summerfield
- Abigail Radar
- Brigette Hinger
- Sarah Poliquin
- Liz Marfia‐Ash
- Leslie Zapata‐Leiva
Institutions
- West Los Angeles College (US)
- University of North Carolina Health Care (US)
- University of Pittsburgh (US)
- Duke University (US)
- Gettysburg College (US)
- RTI International (US)
- Harvard University Press (US)
- Brentwood Hospital (US)
- Elizabeth R. Griffin Research Foundation (US)
- Speedway Fire Rescue (US)
- Development Fund (NO)
- Rome Foundation (US)
- Duke Institute for Health Innovation (US)
- Pflugerville Independent School District (US)
- Duke University Health System (US)
- Japan Society (US)
- International Myeloma Foundation (US)
Publication Details
- Journal
- Journal of Child Psychology and Psychiatry
- Published
- 2025-10-20
- DOI
- https://doi.org/10.1111/jcpp.70063
- Primary Topic
- Autism Spectrum Disorder Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00