Inclusion criteria, exclusion criteria and study summary
Many minimally verbal children and young people and adults with intellectual disabilities (ID) cannot easily report on internal feelings and experiences; therefore, clinicians need to focus on changes in a person’s behaviour, when making a diagnosis of an anxiety disorder. However, existing assessment tools of anxiety often include questions about behaviours that could also indicate pain. These challenges make diagnosis of anxiety in individuals with ID very complicated. Ineffective identification of mental health difficulties may prevent children and young people with ID from accessing appropriate care-pathways and interventions. This study focuses on designing a practical and effective assessment tool for anxiety in children and young people and adults with ID. The tool will be piloted to evaluate its potential impact in clinical services. The methodology applied in the development of the tool will include a) semi-structured interviews to identify potential behavioural indicators of anxiety b) a large-scale questionnaire study to establish the tool’s structure, reliability and validity c) observations of people with intellectual disability to determine if behaviours shown by children and young people agree with scores on the tool, d) comparing the young person's score on the tool with the assessment made by an independent clinician. It is hoped that this tool will eventually be used to streamline care pathways, improving the efficiency of services for children and young people with intellectual disabilities.