Enabling genuine participation in co-design with young people with learning disabilities

ABSTRACT

This paper shares key learnings and emerging principles on ways of enabling genuine participation from young people with learning disabilities in co-design. Reviewing previous research focusing on co-design with young people and people with learning disabilities, we highlight key gaps including – a lack of approaches engaging young people with learning disabilities throughout a co-design process; and limited examples of genuine participation focusing on lived experience and engagement in creative and conceptual decision-making. We present our work with young people with learning disabilities to design a game-based learning tool, with a focus on the co-design process. The work illustrates a situated, tailored Participatory Design approach for engaging participants across all stages of co-design. Findings highlight the importance of contextual preparation by embedding in situ to support multi-vocal, multi-method engagement; and asset-based narratives to empower young people and support expression of voice, enabling creativity and conceptual decision-making. Synthesising key learnings and reflections, we present emerging principles underpinned by a rights-based ethos, with an emphasis on creating the right conditions and developing capacities to enable genuine participation.

KEYWORDS:

• Co-design
• young people with learning disabilities
• creativity
• conceptual decision-making
• genuine participation
• rights-based ethos

Acknowledgments

We thank all the young people who volunteered their valuable time to take part, and for sharing their experiences, ideas, energy and enthusiasm, without which this project would not have been possible. We are also grateful to the Local Area Coordinators and project partners, Stuart Caulfield (Midlothian Council) and Idong Usoro (University of West of Scotland), for their collaboration, contributions and support. We would also like to thank the anonymous reviewers for their careful reading of our manuscript and the valuable comments that helped us in refining this paper for publication.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by the Digital Health and Care Institute funded by the Scottish Funding Council.