What is the Checklist Project?

The Checklist Project is a 3-year research project that started in October 2021. The aim of the project is to develop a checklist for parents and clinicians to use collaboratively, to help identify the causes of behaviours that challenge in children with a moderate-profound intellectual disability.

Children with moderate-profound intellectual disability often have additional physical sensory, cognitive and/or social impairments that place them at high risk for behaviours that challenge, such as self-injurious, aggressive and destructive behaviours. A number of common causes of such behaviours are often overlooked. This can affect how quickly and effectively children are treated.

The checklist is a list of things for parents and clinicians to systematically consider when thinking about behaviours that challenge to enhance assessment and treatment. The checklist can also be used over time to monitor causes and their ongoing impact.

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Who is involved?

The principal investigator is Dr Hayley Crawford, and the project lead is Dr Hayley Trower.

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What will we be doing?

Phase 1: Develop the checklist using co-production methods. A Checklist Development Group will meet once a month for eight months to discuss the checklist items and descriptions, the formatting, the information manual. Measures for assessing the validity of checklist will also be identified.

Phase 2: Obtain feedback from a wider group of collaborators: a group of parents of children with moderate-profound intellectual disability and a group of clinicians working with children with moderate-profound intellectual disability.

Phase 3: Conduct a pilot feasibility and accessibility study with 70 parents and 10 clinicians whereby parents will complete the checklist along with several validity measures and bring the checklist to an appointment with their paediatrician. Parents and clinicians will report on their experience of the checklist.

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Funding

The Checklist Project is funded by The Great Ormond Street Hospital Charity.