Background:

Children with moderate-profound intellectual disability (ID) and complex needs are at high risk for poor behavioural outcomes. Innovative research conducted by the Project Team has identified common and critical causes of poor behavioural outcomes (including self-injurious, aggressive and destructive behaviour) in children with moderate-profound ID and complex needs. These causes include pain and discomfort, anxiety, sleep problems, emotion dysregulation, sensory sensitivity, communication and learning, and parental wellbeing. Importantly, some genetic aetiologies of ID place an individual at higher risk for these causes and hence behaviours. Failure to identify these causes of poor behavioural outcomes is a barrier to access existing effective interventions.

Policy and Practice Partners:

Great Ormond Street Hospital for Children NHS Foundation Trust, South London and Maudsley NHS Foundation Trust, Birmingham Community Healthcare NHS Foundation Trust, Cerebra.

Co-Funding partners:

Great Ormond Street Hospital Charity and Sparks Children’s Medical Research.

Aims and Objectives:

The overarching aim of the project is to develop a checklist, through co-production, to ensure causes of future or existing self-injury, aggressive and destructive behaviours are routinely considered in children with moderate- profound intellectual disability (ID) and complex needs, and to pilot the use of this checklist with parents/carers and Special School Paediatric Clinical Staff (School Nurses and School Doctors).

Methods:

This project focuses on the development of the checklist and evaluating its feasibility. A full-scale evaluation of the checklist will be conducted, subject to feasibility and acceptability established in the current project, and future funding. There are three phases to this study. The first two phases use action research methods and co-production with parents/carers, academics and professionals working with children with moderate-profound intellectual disability (ID) and complex needs to develop the checklist. In Phase 3, a pilot feasibility study will be conducted.

Main Results:

In progress.

Conclusions:

In progress.

Implications for Implementation:

In progress.

Protocol:

In progress.

Publication:

In progress.