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. 2023 May;53(5):1795-1808.
doi: 10.1007/s10803-022-05457-7. Epub 2022 Feb 3.

Effect of Children's Autism Spectrum Disorder Severity on Family Strain and Sleep Quality: A Cross-Sectional Online Survey in the U.S

Gonzalo Durán-Pacheco  1 , Mariabeth Silkey  1 , Michelle Johnson  2 , Chuang Liu  1 , Susanne Clinch  3 , Kiely Law  4   5 , Georg Loss  1
Affiliations

Effect of Children's Autism Spectrum Disorder Severity on Family Strain and Sleep Quality: A Cross-Sectional Online Survey in the U.S

Gonzalo Durán-Pacheco et al. J Autism Dev Disord. 2023 May.

Abstract

To better understand the impact of children's autism spectrum disorder (ASD) severity on families, we evaluated pathways through which ASD severity affected child sleep quality, caregiver strain, and caregiver sleep quality. In a cross-sectional analysis through the U.S.-wide Simons Foundation Powering Autism Research for Knowledge (SPARK) cohort. Participants were caregivers of dependents with ASD aged 3-17 years (N = 3150). We found that increased severity strongly affects caregiver strain and child sleep quality. Child sleep quality was a minor mediator of increasing caregiver strain. Caregiver sleep quality depended on ASD severity only through child sleep quality and caregiver strain. Interventions aimed at improving child sleep quality or reducing caregiver strain could positively impact families of children with ASD.

Keywords: Autism Impact Measure; Autism spectrum disorder; Caregiver strain; Child health; Severity; Sleep quality.

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Conflict of interest statement

GDP, CL, SC, and MJ are full-time employees of F. Hoffmann-La Roche Ltd. GL and MS were employees of F. Hoffmann-La Roche Ltd. at the time this study was completed. KL is a research consultant with the Simons Foundation Autism Research Initiative, which funds and operates SPARK.

Figures

Fig. 1
Fig. 1
Directed acyclic graph with the hypothesized relationships between ASD core symptoms, ASD-related major adversities, and ASD overall caregiver impression of severity, with child sleep quality, caregiver strain, and caregiver sleep quality. aBaseline demographics, socioeconomic, and geographic characteristics for household, caregiver, and child. ASD autism spectrum disorder, BL baseline, CG caregiver, imp impression
Fig. 2
Fig. 2
Participant flow diagram. Note parentheses show % of total participants sent the invitation email. AIM Autism Impact Measure, ASD autism spectrum disorder, CaGI-S Caregiver-reported Global Impression of Severity Autism survey, CGSQ-SF7 Caregiver Strain Questionnaire-Short form 7, SPARK Simons Foundation Powering Autism Research for Knowledge
Fig. 3
Fig. 3
Distribution of AIM total score, child, and caregiver sleep quality, and caregiver-reported ASD severity, ASD-related major adversities, and caregiver strain. a Distribution of AIM scores by child sleep quality categories; b distribution of caregiver strain (CGSQ-SF7) scores by child sleep quality categories; c distribution of child sleep quality standardized scores by caregiver impression of overall ASD severity categories (CaGI-S); d distribution of caregiver sleep quality standardized scores by child sleep quality categories; e multiple correspondence analysis plot of health and ASD-related major adversities (suspended or expelled from school; eloped or strayed; hospitalized for mental health care; seen in ER for mental health care; other mental comorbidities present; child is verbal), ASD overall severity (CaGI-S), and degree of interruption of personal time due to the child’s ASD-related issues (Item 1 CGSQ-SF7). Note a–d horizontal bars show medians, boxes show interquartile ranges, whiskers show Tukey intervals, p values are from Kruskal–Wallis tests. AIM Autism Impact Measure, ASD autism spectrum disorder, CaGI-S Caregiver-reported Global Impression of Severity Autism survey, CGSQ-SF7 Caregiver Strain Questionnaire-Short form 7, ER emergency room
Fig. 4
Fig. 4
Effect of ASD core symptom impact, ASD-related major adversities, and caregiver-reported ASD severity, on child sleep quality, caregiver strain, and caregiver sleep quality. a Effects on child sleep quality; b effects on caregiver strain; c effects on caregiver sleep quality adjusted for caregiver strain and child sleep quality; d effects on caregiver sleep quality (not adjusted for caregiver strain and child sleep quality) from a multivariable linear model. Note effect estimates are standardized regression weights adjusted for child, caregiver, and household characteristics (as in Table 1); values over 0 correspond to a worsening of outcomes (e.g., worse sleep quality or greater caregiver strain). AIM Autism Impact Measure, ASD autism spectrum disorder, CaGI-S Caregiver-reported Global Impression of Severity Autism survey, CGSQ-SF7 Caregiver Strain Questionnaire-Short form 7, CI confidence interval, ER emergency room
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