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Caregivers' Burden of School-Aged Children with Neurodevelopmental Disorders: Implications for Family-Centred Care
Giulia Purpura1, Luca Tagliabue2, Stefania Petri3
1School of Medicine and Surgery, University of Milano Bicocca, 20900 Monza, Italy.
Insights
Caregiver burden is high for parents of children with neurodevelopmental disorders, particularly Autism Spectrum Disorder and Intellectual Disability. Burden increases with more rehabilitation hours and decreases as children age.
Area of Science:
- Neurodevelopmental Disorders
- Caregiver Psychology
- Rehabilitation Science
Background:
- Caregivers of children with neurodevelopmental disorders face significant psychosocial challenges.
- Predisposing factors for caregiver burden are not well-established in existing literature.
Purpose of the Study:
- To compare caregiver burden levels across different neurodevelopmental disorders in an Italian sample.
- To identify clinical and sociodemographic factors associated with caregiver burden.
Main Methods:
- 105 primary caregivers of school-aged children with neurodevelopmental disorders participated.
- Participants completed online questionnaires: General Questionnaire, Caregiver Burden Inventory, and Zarit Caregiver Burden Scale.
Main Results:
- Approximately 50% of caregivers reported moderate to high stress levels.
- Caregivers of children with Autism Spectrum Disorder and Intellectual Disability experienced greater burden compared to other groups.
- Caregiver burden correlated negatively with child's age and positively with weekly rehabilitation hours.
Conclusions:
- Caregiver burden severity is influenced by the specific type of neurodevelopmental disorder.
- An ecological, family-centered approach is crucial for supporting the well-being of children with neurodevelopmental disorders and their families.
Abstract:
Caregivers of children with neurodevelopmental disorders play a central role during the rehabilitation and education processes, but they have an increasing risk of psychosocial problems even if the literature is not so agreed upon the specific and predisposing factors to that. The aim of this study was to examine possibly differences of burden levels in an Italian sample of principal caregivers of children with different kinds of neurodevelopmental disorders and to investigate the possible links between some clinical and sociodemographic variables and the levels of caregiver's burden. 105 caregivers of school-aged children with neurodevelopmental disorders were included in the study and completed three online questionnaires (General Questionnaire, Caregiver Burden Inventory, Zarit Caregiver Burden Scale). Results highlighted that about the half of caregivers show from moderate to high levels of stress, but parents of children with Autism Spectrum Disorder and Intellectual Disability show greater difficulties than parents of children with Attention-Deficit Hyperactivity Disorder, Language and/or Learning Disorder, and Developmental Coordination Disorder. Moreover, it was evident a negative correlation between the burden levels and the age of children, but also a direct correlation between the burden levels and the weekly hours of rehabilitation. These findings show that severity of caregiver's burden is dependent by the type of neurodevelopmental disorder and suggest that an ecological and family-centred approach is necessary to guarantee the life health developmental course of these children.
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