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

Area of Science:

• Intellectual Disability Research
• Patient and Public Involvement (PPI) in Research
• Behavioral Science

Background:

• Patient and Public Involvement (PPI) is crucial in research but often overlooked in intellectual disability (ID) contexts.
• Barriers to PPI in ID research need addressing to ensure inclusivity.
• This study focused on developing a tool to support identification and monitoring of challenging behaviors in children with moderate-to-profound ID.

Purpose of the Study:

• To collaboratively develop The Behaviour Checklist with parents/carers and clinicians.
• To create a user-friendly tool for identifying and monitoring causes of challenging behaviors in children with moderate-to-profound intellectual disability.
• To ensure the checklist is practical and relevant for both service users and providers.

Main Methods:

• Utilized consultation, collaboration, and user-controlled research principles.
• Established a Checklist Development Group with parents/carers, clinicians, and researchers.
• Incorporated feedback from focus groups and followed the GRIPP2-SF reporting framework.

Main Results:

• PPI significantly refined the checklist's purpose, functionality, clarity, and visual design.
• Checklist items and guidance notes were revised for better real-world alignment and lay comprehension.
• The checklist was recognized as an aide memoire for identifying patterns, structuring conversations, monitoring changes, and supporting clinical decision-making.

Conclusions:

• Collaborative development with parents/carers and clinicians resulted in a scientifically valid and practically relevant tool.
• PPI strengthened stakeholder relationships and collaboration potential.
• The Behaviour Checklist is ready for pilot testing and has the potential to improve outcomes for children with ID and their families.