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Co-creation and Co-production in Research with People with Intellectual Disabilities

Petropoulou, Evangelia; Bak-Klimek, Anna; O’Leary, Lisa

Authors



Contributors

Gabriel Bennett
Editor

Emma Goodall
Editor

Abstract

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.

Citation

Petropoulou, E., Bak-Klimek, A., & O’Leary, L. (2025). Co-creation and Co-production in Research with People with Intellectual Disabilities. In G. Bennett, & E. Goodall (Eds.), The Palgrave Encyclopedia of Disability (1-14). Palgrave Macmillan. https://doi.org/10.1007/978-3-031-40858-8_242-1

Online Publication Date Feb 23, 2025
Publication Date 2025
Deposit Date Feb 24, 2025
Publisher Palgrave Macmillan
Peer Reviewed Peer Reviewed
Pages 1-14
Book Title The Palgrave Encyclopedia of Disability
ISBN 9783031408588; 9783031408588
DOI https://doi.org/10.1007/978-3-031-40858-8_242-1
Public URL http://researchrepository.napier.ac.uk/Output/4129622