Adolescents with an intellectual disability often also have additional chronic disorders which in turn lead to higher chances of emotional and behavioural problems. These factors decrease their chances of fully participating in society. Barth Oeseburg came to these conclusions in his thesis, for which he will be awarded a PhD on Wednesday 17 November 2010.
Sixty-three percent of pupils and students (12-18 years old) with an intellectual disability also have one or more chronic disorders, Oeseburg states in his study. Such disorders can be physical (e.g. juvenile rheumatoid arthritis, asthma) or mental (autism, ADHD, etc.) problems. Amongst pupils and students without an intellectual disability the percentage with a chronic disorder is much lower (12%).
At the request of umbrella organization PROREC Noord, Oeseburg researched pupils and students at schools for elementary vocational training and the Regional Expertise Centres in Groningen and Drenthe provinces. ‘Adolescents are trained there to function independently in society’, Oeseburg says. ‘They are taught basic skills, such as grocery shopping and preparing meals. But they also learn work skills to increase their chances of landing a job.’
Everyone in his study group at least had an intellectual disability. Using questionnaires for parents, the school counsellors and information from the children’s GPs, Oeseburg was able to establish what other problems the children had. ‘It was striking that the parents indicated more problems than the counsellors and GPs. This could be because the parents diagnose themselves, but also could be because the GPs and schools aren’t fully abreast.’
Oeseburg concluded that 30 to 64% of the adolescents with an intellectual disability who also have a chronic disorder have emotional and behavioural problems, depending on the extent and number of the chronic disorders. ‘A child with an intellectual disability that also has juvenile rheumatoid arthritis, for instance, could be troubled by pain and exhaustion due to a heavy school workload, which in turn could lead to problem behaviour. As yet, it still is often not acknowledged that the chronic disorder lies at the root of the problems’, Oeseburg explains. However, the emotional and behavioural problems reduce their already slim chances on the job market.’
Oeseburg discovered during his research that schools are often unaware of chronic disorders or their extent, nor of the relationship with the emotional and behavioural problems exhibited by their pupils. ‘This is certainly important, as it’s an extremely vulnerable group. You don’t want them ending up home on the sofa at eighteen, or even worse – getting caught up in crime or in drug addiction.’
Oeseburg thus recommends that schools for special education and for elementary vocational training take a much closer look at their new pupils and ask the parents specific questions. The questions he asked in his research, for instance, would help provide schools with a better understanding of pupils. ‘It’s also important to involve job market experts at an early stage’, Oeseburg says. ‘That way, you can dovetail the skills and interests of a pupil to the demands certain jobs entail. Then pupils also have enough time to learn the necessary skills for jobs that suit them.’
Barth Oeseburg (Groningen, 1961) took a degree (HBO-V) in Nursing in Groningen. While working as a nurse in the UMCG, he studied Sociology in the evenings at the University of Groningen. After receiving his degree in 1993, he continued working at the UMCG. He was the first Multiple Sclerosis consulting nurse in the Netherlands and initiated a number of health-care renewal projects, including one for home care. In 2001 he switched to academic research with the Health Sciences department of the University of Groningen. Oeseburg now works at the UMCG Wenckebach Institute as programme coordinator for the specialist degree programme on nursing for the chronically ill.Oeseburg will be awarded a PhD in Medical Sciences and was supervised by Prof. J. W. Groothoff and Prof. S. A. Reijneveld. He will defend his thesis, entitled ‘Prevalence and impact of chronic diseases in adolescents with intellectual disability’, at 4.15 p.m. on Wednesday 17 November in the Academy Building, Broerstraat 5, Groningen.
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