Some problems are easier to observe from the outside than others. Parents do not see their children in every setting. This might mean we do not have a full picture of the mental health concerns of children with developmental disabilities.

One reason for relying on parent report, might be that the assessments are inaccessible for some young people – they are cognitively challenging (hard to understand). This might mean some children could self-report and some could not. This PhD has involved a range of studies looking at how mental health has been measured in young people with developmental disabilities, whether the assessments have been validated for self-report for this group and what adaptations have been made or should be made to aide them in self-reporting.

Three papers have been published as a result of this work:

• Cognitive Accessibility Tracking Questionnaire (CATQ) study

Some children with neurodisabilities may need questions about their mental health to be adapted (e.g., adding visual support, using different response options) so they can share their experiences. However, in research, changes like this can be problematic as they risk affecting results. We call this introducing bias. This study introduces a simple checklist (the CATQ) that tracks adaptations and helps researchers understand and manage possible bias while allowing more children to take part in self-report interviews because they have the support they need.

Ivarsson, M., Danielsson, H., Almqvist, L., & Imms, C. (2025). Enhancing cognitive accessibility in assessments for children with neurodisability: Development and implementation of an adaptation tracking questionnaire. Disability and Rehabilitation, 47(18), 4830–4839. https://doi.org/10.1080/09638288.2025.2455532

• Exploring challenges when measuring mental health problems in children with disability

When measuring mental health problems in children with neurodisabilities, some challenges related to the choice of the measurement tool are often overlooked. For example, parent reports may be overly prioritized over child self-reports for practical reasons. This study showed that in many studies where mental health problems of children with disability are tracked over time, there is a high risk that lack of attention to these challenges may skewed the results – this  means that sometimes problems may be over-estimated and other times they might be under-estimated

Ivarsson, M., Danielsson, H., & Imms, C. (2025). Measurement issues in longitudinal studies of mental health problems in children with neurodevelopmental disorders. BMC Psychology, 13(1), Article 267. https://doi.org/10.1186/s40359-025-02450-4

• Do mental health survey questions work as expected for different groups of children?

This study tested whether nine questions from a Swedish national survey can be used together to make one main ‘mental health’ score for children. They also checked whether this mental health score worked well for different groups of children (e.g., disability, age, gender), and the time of measurement. By ‘worked well’ we mean that these different groups responses suggest that the same idea of mental health is being captured by all the groups. Results showed that the mental health scale worked well, but because there were small differences between the groups, comparisons between groups should be made carefully.

Ivarsson, M., Homman, L., & Danielsson, H. (2025). Is mental health problems measurement equivalent across disability, gender, age, and cohort in children? Findings from a Swedish national survey. Scandinavian Journal of Public Health, 53(1), 14034948251380635. https://doi.org/10.1177/14034948251380635

This doctoral research is funded through the Swedish Research Foundation as part of the Participation and Mental Health project.