Edinburgh Napier University

  Historically, individuals with intellectual disabilities (IDs) have been excluded from research, particularly its design, due to assumptions about their capacity and overprotective attitudes toward their carers. Patient and public involvement offers a transformative framework to challenge these exclusions, with co-creation and co-production providing essential approaches for including people with IDs in research. These approaches highlight collaboration, shared responsibility, and equity among stakeholders, researchers, individuals with IDs, and caregivers. Key principles such as equality, accessibility, and reciprocity underpin this process and ensure that participants’ lived experiences enrich research outcomes.

This chapter explores the principles, benefits, and challenges of co-creation and co-production in research with individuals with IDs and it offers practical solutions and innovative methods to overcome these challenges. Simplified consent processes and visual tools like Talking Mats improve accessibility, while sensory-based methods, such as MultiSensory Music Drama, engage those with severe communication challenges. Consensus-building techniques, including the Delphi method and Nominal Group Technique, ensure diverse voices are heard and collective ideas refined.

These methods, combined with trust-building strategies and adaptive materials, aim to balance power dynamics and ensure participants with IDs are involved as equal partners throughout the research process. This chapter calls for continued research and efforts to refine and sustain these practices to fulfill their promise of inclusivity, shared power, and trust.