Prevalence and impact of chronic diseases in adolescents with intellectual disability

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Chapter 1 introduces the key concepts and the broader context of this thesis and presents its aims, research questions and the methodology of the studies. The studies originate from the need of schools for practical training and schools for special secondary education to know more about the chronic diseases of their pupils with ID and about the impact of these diseases on their emotional and behavioural functioning.
Schools for practical training and schools for special secondary education prepare pupils for entering the labour market and for participation in society. They need information on whether and to what degree ID-adolescents have additional chronic diseases because both ID and chronic diseases can lead to limitations in adolescents’ capacities. Capacities seem to be particularly limited in case of emotional and behavioural problems. In addition, limited capacities can have a profound effect on participation of ID-adolescents in educational programs, occupational opportunities and societal participation. However, evidence on the prevalence rates of chronic diseases in ID-adolescents and the impact on their emotional and behavioural functioning was limited. The aims of this thesis were: (1) to explore the prevalence of chronic diseases in ID-adolescents and the impact on their behaviour; and (2) to assess the knowledge about chronic diseases in ID-adolescents among teachers working in schools for practical training and special secondary schools. These goals were translated in the following five research questions:
1. What is known in the literature on the prevalence rates of chronic diseases in populations of children with ID?
2. What is the prevalence of chronic diseases in ID-adolescents aged 12 – 18 years in two provinces in the north of the Netherlands, Groningen and Drenthe (total population of about 1.1 million people)?
3. What is the concordance between the knowledge teachers have on the presence of chronic diseases in ID-adolescents and the knowledge of parents and healthcare professionals?
4. What is the association between chronic diseases in ID-adolescents and their emotional and behavioural functioning?
5. What is the association between chronic diseases in ID-adolescents and the full range of pervasive developmental disorder behaviour?

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