Abstract
Toward the development of a new parent-rating for insomnia, this multi-site qualitative study explored sleep problems and related impacts in children with autism spectrum disorder (ASD) and their families. To ensure content validity of the measure, we conducted six focus groups with caregivers (N = 25) of 24 children (age 3 to 18 years) with ASD. Based on parent report, all children had a history of mild or greater insomnia. The focus group transcripts were systematically coded to identify major themes. Verbatim comments from caretakers were used to generate 134 candidate items. Further review by the research team and an expert panel followed by individual cognitive interviews with 12 parents reduced the item bank to 40. The thematic analysis of focus group transcripts identified 7 categories: (1) Trouble falling asleep; (2) trouble staying asleep; (3) early morning waking; (4) bedtime routines; (5) parental strategies for bedtime management; (6) impact of sleep problems on the child; and (7) impact of sleep problems on the family. The Flesch Kincaid Grade Level of the 40-item version was 7.2 (seventh grade reading level). Insomnia in children with ASD shares features in common with insomnia in the general pediatric population. However, perhaps owing to autistic features such as insistence on sameness, sensory sensitivities, communication impairments, insomnia in children with ASD appears to have unique behavioral manifestations. Content validity and item clarity of the 40-item bank were supported by expert panel review and cognitive interviews with caregivers of children with ASD.
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Acknowledgments
We would like to thank Michael C. Edwards, PhD, Beth A. Malow, MD, Judith Owens, MD, Paul Carney, MD, Michael G. Aman, PhD, Sydney Lott, BA, Leah Barto, MPH for contributing to this project. We also acknowledge the contribution of parents who participated in this project.
Funding
This work was funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development Measuring Sleep Problems in Children with ASD Grant (No. R01HD099480).
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CS, LL, CT, CRJ and LS contributed to the study conception, design, methodology, and investigation. CS, LL, CT, CRJ and LS contributed to the study conception and visualization. Project administration, material preparation, data collection, and analysis were performed by CS, LL, CT, CRJ, LS, AM, DB, and MLA. The first draft of the manuscript was written by CS and LS; all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
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Dr. Lawrence Scahill has served as a consultant to Janssen, Impel, and Finch. Dr. Lawrence Scahill receives book royalties from Oxford, Guilford and American Psychological Association and license fees from Roche and Yamo. Dr. Luc Lecavalier receives license fees from Roche and Yamo and book royalties from Oxford. Dr. Cynthia R. Johnson receives book royalties from Oxford and American Psychological Association. We have no other conflicts of interest to disclose.
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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. The study was approved by the Ohio State Behavioral and Social Sciences Institutional Review Board (No. 2019B0353).
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Sinha, C., Lecavalier, L., Johnson, C.R. et al. Qualitative Exploration Toward the Development of a Parent-Rated Scale for Insomnia in Children with Autism Spectrum Disorder. J Autism Dev Disord (2023). https://doi.org/10.1007/s10803-022-05865-9
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DOI: https://doi.org/10.1007/s10803-022-05865-9