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Distress Levels of Parents of Children with Neurodevelopmental Disorders during the COVID-19 Pandemic: A Comparison between Italy and Australia.

ABSTRACT: Parents of children with a neurodevelopmental disorder (NDD) report higher levels of distress compared to those of typically developing children. Distress levels may be heightened by the restrictions associated with the COVID-19 pandemic. However, it is unclear whether distress levels of parents varied by the diagnosis of neurodevelopmental disorder in children during the COVID-19 pandemic. This study aims to investigate whether parental distress was influenced by the type of NDD. Participants were from Australia (N = 196) and Italy (N = 200); the parents of children aged 3-18 were invited to complete an online self-reported survey which included the 6-item Kessler Psychological Distress Scale (K6) to determine parental distress. The results show that intellectual or learning disorder (ILD) is a major contributor to parental distress compared to other NDDs in both Australia and Italy. Moreover, the worsening of symptomatic changes in children with NDDs was significantly associated with parental distress. The differences between the two countries in terms of the pandemic impact, however, were not statistically significant. The results suggest that intervention strategies need to be tailored for individual clinical information and factor in the society's stringency level of anti-contagion policies to improve parental wellbeing.

SUBMITTER: Burnett D

PROVIDER: S-EPMC8583226 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:Understanding the overall utility of biological testing for autism spectrum disorder (ASD) is essential for the development and integration of biomarkers into routine care. One measure related to the overall utility of biological testing is the knowledge that a person has about the condition he/she suffers from. However, a major gap towards understanding the role of knowledge in overall utility is the absence of studies that have assessed knowledge of autism along with its predictors within a representative sample of families within the context of routine care. The objective of this study was to measure knowledge of ASD among families within the routine care pathway for biological testing in ASD by examining the association between knowledge with potential correlates of knowledge namely sociodemographic factors, parental stress and distress, and time since diagnosis among parents whose child with ASD is undergoing clinical genetic testing. Parents of a child diagnosed with ASD (n = 85, Mage = 39.0, SD = 7.7) participating in an ongoing prospective genomics study completed the ASD Quiz prior to undergoing genetic testing for clinical and research purposes. Parents also completed self-reported measures of stress and distress. Parent stress and distress was each independently correlated with knowledge of ASD, rs ≥ 0.26, ps < 0.05. Stepwise regression analysis revealed a significant model accounting for 7.8% of the variance in knowledge, F (1, 82) = 8.02, p = 0.006. The only factor significantly associated with knowledge was parental distress, β = 0.30, p = 0.006. Parental stress, time since diagnosis, and sociodemographic factors were not significant predictors in this model. We concluded that families require tailored support prior to undergoing genetic testing to address either knowledge gaps or high distress. Ongoing appraisal of the testing process among families of diverse backgrounds is essential in offering optimal care for families undergoing genetic testing.

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Distress Levels of Parents of Children with Neurodevelopmental Disorders during the COVID-19 Pandemic: A Comparison between Italy and Australia.

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