Developing a Patient and Public Involvement Training Course for People with Intellectual Disabilities: The Leicestershire Experience

Abstract

There is a lack of meaningful involvement of people with intellectual disability in research, outside of the context of study participation. There is a need to develop adapted means of facilitating Patient and Public Involvement when working with people with intellectual disability, that takes account for their level of neurodevelopmental functioning. In this article we describe a Patient and Public Involvement course developed for people with intellectual disability, developed by professionals working with this group, which was subsequently piloted in Leicestershire UK. Different versions of the course were developed for student participants with different levels of neurodevelopmental functioning and communication impairment. For Part 1 of the course (‘What is Research?’), students from Pathway 1 (mild intellectual disability) and Pathway 2 (moderate intellectual disability) both had significantly increased (p ≤ 0.05) mean knowledge test scores post-course relative to pre-course, with non-significant increases in mean confidence test scores for both pathway groups. For Part 2 of the course (‘Your Involvement in Research’), most participants agreed or strongly agreed with the statement ‘I found this interesting’ (Pathway 1: 8 of 9 students [89%]; Pathway 2: 8 of 10 students [80%]), but less students provided equivalent responses to the statement ‘I want to be involved in research in the future’ (Pathway 1: 2 of 9 students [22%]; Pathway 2: 8 of 10 students [80%]). This training course provides a template to provide basic training for people with intellectual disability with respect to research involvement, but requires further evaluation in larger student samples of diverse demographic and neurodevelopmental characteristics.