Mental health needs and availability of mental health care for children and adolescents with intellectual disability in Berlin

Abstract

BACKGROUND: The increased risk of mental health problems in children and adolescents with intellectual disability (ID) has been reported in several studies. However, almost no research has been conducted on parents' experiences with the general mental health system. We have investigated the prevalence of emotional and behavioural problems in children with ID as well as the availability and quality of mental health care from the parents' point of view. METHODS: Teachers of specialised schools for ID in Berlin were asked to complete the Teacher's Report Form (TRF) of the Child Behavior Checklist. Information was collected for 1226 children and adolescents aged 6-18 years with mild to profound ID (response 70.5%). The availability and quality of mental health care was assessed by a questionnaire given to parents who had already been seeking help for their children. A total of 330 parents completed the questionnaires (response 62.0%). In addition to univariate analysis, we conducted multiple logistic regressions regarding the psychopathology reported by teachers (TRF-syndrome scales) and difficulties concerning mental health care reported by parents for a paired sample of 308 children. RESULTS: Overall, 52.4% of the children and adolescents with ID had a total problem score on the TRF in the deviant range (47.1% when eliminating four items reflecting cognitive deficits). Compared with the general population normative sample of children, this is a three-time higher prevalence. The most striking problems were thought problems (schizoid and obsessive-compulsive), aggressive behaviour, attention problems and social problems. Parents whose children had more severe behavioural or emotional dysfunction reported more difficulties with the mental health system. From the parents' point of view, mental health professionals frequently did not feel responsible or were not sufficiently skilled for the treatment of children with ID. As a consequence, 96% of all parents were longing for specialised in- and outpatient services. CONCLUSIONS: This study confirms the findings from other studies regarding the high rate of co-occurrence of ID and mental health problems in youths. Results indicate that both are strongly requested by parents: specialised in- and outpatient services, as well as more professional general services and equitable treatment for all children, with and without ID.