Adaptief Functioneren bij Kinderen met Coffin-Siris Syndroom en de Opvoedingsbelasting van Hun Ouders

Coffin-Siris Syndrome (CSS) is a rare genetic disorder characterized by various physical and cognitive features, including developmental delays and intellectual disabilities. This research aims to deepen our understanding of the behavioural phenotype of CSS by examining the adaptive functioning of children with this condition and exploring its potential link to parenting stress. Adaptive functioning refers to the ability to perform daily activities and meet personal and social needs in line with age and cultural expectations. This study aims to answer the following questions “To what extent does the adaptive functioning of children with Coffin-Siris Syndrome differ from their normative age peers?” and “To what extent does the adaptive functioning of children with Coffin-Siris Syndrome predict the parenting stress experienced by their parents?”. The sample included 26 children and those parents with an age between four and seventeen years old, including 12 boys and 14 girls. The...Show moreCoffin-Siris Syndrome (CSS) is a rare genetic disorder characterized by various physical and cognitive features, including developmental delays and intellectual disabilities. This research aims to deepen our understanding of the behavioural phenotype of CSS by examining the adaptive functioning of children with this condition and exploring its potential link to parenting stress. Adaptive functioning refers to the ability to perform daily activities and meet personal and social needs in line with age and cultural expectations. This study aims to answer the following questions “To what extent does the adaptive functioning of children with Coffin-Siris Syndrome differ from their normative age peers?” and “To what extent does the adaptive functioning of children with Coffin-Siris Syndrome predict the parenting stress experienced by their parents?”. The sample included 26 children and those parents with an age between four and seventeen years old, including 12 boys and 14 girls. The Adaptive Behavior Assessment System, Third Edition (ABAS-3) was used to evaluate adaptive functioning, while the Opvoedingsbelastingsvragenlijst (OBVL) assessed parenting stress. The results show that children with CSS exhibit below-average adaptive functioning in comparison to the normative levels of their same-age peers. Parenting stress is significantly elevated for both parents in comparison with parents of children from the general population. However, adaptive functioning of children with CSS does not predict parenting stress. These findings suggest that children with CSS need additional support with their daily activities and that factors other than adaptive functioning may contribute to the heightened stress levels experienced by their parents.Show less

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Adaptief Functioneren bij Kinderen met Coffin-Siris Syndroom en de Opvoedingsbelasting van Hun Ouders