Navigating care together: developing a collaborative checklist to improve care for children with intellectual disabilities

Background: While Patient and Public Involvement (PPI) has been increasingly integrated into research, its application in intellectual disability contexts can sometimes be overlooked due to perceived barriers. This study describes the collaborative development of The Behaviour Checklist, a tool designed to help parents/carers and clinicians identify and monitor causes of behaviours that challenge in children with moderate-profound intellectual disability.

Methods: The study utilised consultation, collaboration, and user-controlled research, as outlined by INVOLVE. A Checklist Development Group of parents/carers, clinicians, and researchers reviewed and revised Version 1 of the checklist during monthly meetings over eight months. Feedback from two additional focus groups comprising parents/carers and clinicians was incorporated to refine usability, content, and relevance. The process followed the GRIPP2-SF reporting framework to ensure quality and consistency.

Results: PPI contributed significantly to the checklist development by refining its purpose, functionality, item clarity, and visual format. For example, checklist items were revised to better align with real-world experiences, and guidance notes were simplified for lay comprehension. Feedback emphasised the checklist’s role as an aide memoire for identifying behavioural patterns and structuring clinical conversations. Parents/carers also highlighted its potential for monitoring changes, and supporting formal applications, while clinicians noted its utility in clinical decision-making. The finalised checklist was prepared for a pilot study, to assess its feasibility and acceptability.

Conclusions: The involvement of parents/carers and clinicians positively influenced the checklist’s design, fostering a resource that balances scientific validity with practical relevance for service users and providers. PPI also strengthened relationships between stakeholders, paving the way for future collaboration. The checklist is ready for feasibility and acceptability testing and has the potential to improve outcomes for children with intellectual disabilities and their families by facilitating better understanding and management of behaviours that challenge.