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 codesign 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 gamebased 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.

‘I Got To Answer the Way I Wanted To’: Intellectual Disabilities and Participation in Technology Design Activities

“…Our results indicate that social interaction can be encouraged by participation in design activities. This is in line with earlier studies reporting that design activities can encourage positive social experiences in young people with intellectual disabilities (Raman & French 2021), responsibility in children with disabilities (Benton & Johnson 2015), and engagement (Sitbon & Farhin 2017). Our study supports that communication during design activities with people with intellectual disabilities is vital to obtain productive outcomes (Sitbon & Farhin 2017).…”

“…The participants frequently described participation as a positive experience. This finding supports earlier studies involving children (Benton & Johnson 2015) and young people (Raman & French 2021), suggesting that participation in design activities can foster feelings of enjoyment. In our study, some enjoyed drawing and writing, others mentioned interaction with technology.…”

“…Other reported benefits include collaboration skills, content knowledge, and improved problem-solving abilities (McNally et al 2017). Furthermore, studies on young people with intellectual disabilities have reported learning, ownership, increased creativity, and making friends as impacts of participation in design activities (Raman & French 2021). However, studies have reported adverse outcomes, such as lack of enjoyment (Malinverni et al 2014), frustration, and boredom (Parsons & Cobb 2014).…”

Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol

“… 18 In a recently published co-design study with young people with intellectual disability, the young people involved in the co-design process were found to have had genuine participation and demonstrated creative choice in the process. 19 Participants in the co-design reported a sense of satisfaction and value as their ideas were listened to and came to fruition, as well as reporting feelings of learning, ownership and making new friends. 19 …”

“… 19 Participants in the co-design reported a sense of satisfaction and value as their ideas were listened to and came to fruition, as well as reporting feelings of learning, ownership and making new friends. 19 …”