Theme: Comborbidity

Project Description

Background: There are 1.5 million people with an intellectual disability (ID) in the UK, with over half presenting with ID associated with either a rare genetic syndrome or a co-occurring condition such as autism. People with moderate-profound ID and complex needs are at high risk of poor mental health and behaviours that challenge, including self-injurious and aggressive behaviour. Within ID research, behaviours that challenge are recognised as an important mental health concern and may indicate underlying psychological distress, unmet physical or emotional needs, or environmental factors, particularly where communication difficulties limit the expression of distress. We previously co-designed a clinical checklist of common and critical causes of poor behavioural outcomes to improve identification, monitoring and intervention pathways for children with ID and complex needs. This project will revise this checklist for adults, identify implementation opportunities and examine its psychometric properties.

Project Overview: This PhD aims to develop and validate an adult version of the Behaviour Checklist, originally developed for children with ID. The project will address the lack of suitable behavioural and mental health assessment tools for adults with ID by adapting and validating the checklist, supporting more systematic identification of factors contributing to behaviours that challenge and associated mental health needs.

Aims and Methodology: The research will consist of four interlinked studies:

1. Systematic literature review, with potential meta-analyses, examining biological, psychological and environmental causes and contributing factors of behaviours that challenge.
2. Mapping assessment practices and implementation opportunities through stakeholder interviews, examining current behavioural and mental health assessment approaches, referral pathways and barriers to checklist integration.
3. Stakeholder-informed adaptation through focus groups with carers and clinicians and cognitive interviews to develop an adult-appropriate checklist.
4. Psychometric evaluation of the adapted checklist, assessing its reliability and validity across adult care settings.

Impact: The project will produce a validated, clinically useful tool to support recognition of behaviours that challenge as an important indicator of mental health and wellbeing in adults with ID, improving identification of unmet needs, care planning and service delivery.