User Participation When Users have Mental and Cognitive Disabilities
Stefan Johansson, Jan Gulliksen, Ann Lantz · 2015 · ASSETS '15: Proceedings of the 17th International ACM SIGACCESS Conference on Computers & Accessibility · doi:10.1145/2700648.2809849
Summary
This paper describes methods developed to enable meaningful participation in ICT research by people with mental and cognitive disabilities—a population often excluded from user studies. Over 100 participants with conditions including depression, anxiety disorder, bipolar disorder, schizophrenia, and panic disorder participated in the study conducted across six Swedish cities between October 2013 and February 2014. The research combined scientific methods with "Folkbildning" (Nordic non-formal adult education) traditions, using "study circles"—democratic group discussions led by facilitators rather than teachers. The project partnered with RSMH, a member-driven organization for social inclusion of people with mental illness, whose representatives acted as trusted intermediaries between researchers and participants. Participants described cognitive difficulties mapped to ICF categories: sustaining and shifting attention, short-term memory, organization and planning, time management, problem-solving, handling stress, and completing complex or multiple tasks. These difficulties meant that traditional participation methods (surveys, standard interviews) were insufficient. Small details, unexpected changes, or poor treatment could result in dropouts. The researchers developed specific accommodations: neutral meeting places free from authority associations, shared initial meals to equalize social status and address practical hunger concerns, and "trust markers"—environmental signals like tennis balls on chair legs to reduce noise that signaled care and safety.
Key findings
The study achieved zero dropouts among participants who attended the first of three meetings—a remarkable result for this population. Key methodological innovations included: **Prioritizing exercises**: Participants wrote issues on post-it notes, collaboratively clustered them, then voted using sticky dots. This gave quieter participants equal influence over discussion topics. **Mock-up visualizations**: Visual summaries of discussions proved far more engaging than written minutes. Participants began creating their own visualizations to bring to meetings. One powerful tool was the "contact map" showing the 30-50 different service contacts a person with mental illness must manage—making visible an overwhelming administrative burden. **Temporal structure**: Weekly 3-hour meetings over three weeks generated more insight than equivalent single-day sessions. Time between meetings allowed reflection—participants who were silent initially became more active when topics returned in later sessions. **Intertwined analysis**: Participants contributed to data analysis, not just data collection. When topics "looped" back in later sessions with visualizations, participants corrected interpretations and added nuance. This collaborative analysis increased data quality. Trust emerged as the central factor. Participants scrutinized researchers, meeting spaces, and activities for signs of trustworthiness before committing to participation. The visible effort to accommodate their needs (like noise reduction) was itself interpreted as evidence of good intentions.
Relevance
This research fills a critical gap in accessibility methodology. While participatory design is well-established for users with sensory or motor disabilities, people with mental and cognitive disabilities remain largely excluded from ICT development despite being significant technology users. The paper notes that none of the 100+ participants had ever been asked to participate in ICT product development. The methods are practical and transferable: study circles, intermediaries from trusted organizations, neutral venues, shared meals, visual documentation, and chunked questionnaires can be adapted by other researchers. The emphasis on trust markers—environmental and social signals that communicate care—offers guidance beyond this specific population. For accessibility practitioners, the "contact map" visualization reveals an underappreciated accessibility barrier: the cognitive load of navigating fragmented support systems. This systemic complexity compounds the individual's cognitive difficulties. The paper also demonstrates that participation methods must account for fluctuating conditions—participants might miss a session due to a medical appointment but return, unlike traditional studies that would count this as dropout. Flexibility and persistence yield inclusion.
Tags: mental health · cognitive disability · participatory design · user research · inclusion · depression · anxiety · schizophrenia · bipolar disorder · research methods
Standards referenced: ICF