Abstract

Parenting a child with a disability, such as neurodevelopmental disorders and genetic syndromes, implies a high level of stress. During the COVID-19 outbreak—as a period implying additional challenges—few studies have specifically investigated caregivers’ distress among neurodevelopmental disabilities. The objective of the study is to investigate whether during the COVID-19 pandemic, the level of parental stress differs between four disability groups including neurodevelopmental disorders (autism spectrum disorder (ASD), attention deficit and hyperactivity disorder (ADHD)) and genetic syndromes (Rett syndrome (RTT), Sotos syndrome (SS)) in comparison to families with typical development offspring (TD). In total, 220 Italian parents of children affected by neurodevelopmental disabilities (74 ASD, 51 ADHD, 34 SS, 21 RTT, 40 TD; age M 9.4 ± SD 4.2) underwent a standardized evaluation for stress related to parenting through the self-report questionnaire, Parental Stress Index-Short Form (PSI-SF). The main findings show greater levels of parental stress—mainly linked to child behavioral characteristics rather than parental sense of competence—in parents of children affected by a disability in comparison to children with typical development. This study highlights the need to support not only individuals with special needs but also their own caregivers: core figures in the management and outcome of children disorders.

Highlights

  • Parents of children with disabilities, including neurodevelopmental disorders and genetic syndromes, experience daily high levels of stress related to parenting.The act of parenting a child with special needs implies several difficulties to be dealt with that may impact the caregivers’ quality of life [1,2,3]

  • We aimed to evaluate the level of parental stress during the COVID-19 pandemic through a standardized instrument—the Parental Stress Index-Short Form (PSI-SF)— applied to families with children and young adolescents affected by neurodevelopmental disorders and by genetic syndromes implying developmental disorders

  • In this study we investigated whether the level of parental stress during the COVID-19 pandemic differed among groups of children with neurodevelopmental disorders and genetic syndromes (Rett syndrome, Sotos syndrome) in comparison to children with typical development

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Summary

Introduction

Parents of children with disabilities, including neurodevelopmental disorders (i.e., autism, attention deficit hyperactivity disorder) and genetic syndromes, experience daily high levels of stress related to parenting. The act of parenting a child with special needs implies several difficulties to be dealt with that may impact the caregivers’ quality of life [1,2,3]. Such difficulties include chronicity of child’s disability, therapeutical intervention cost and daily organization/schedule, management of daily school and after school activities, and lack of social support. It is well known that caregivers of children with ADHD experience a higher level of parental stress, and that the positive relationship between ADHD symptoms’ severity and parenting stress is clearly established [7,8]

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