Using Participatory Design with Proxies with Children with Limited Communication
Foad Hamidi, Melanie Baljko, Isabel Gómez · 2017 · Proceedings of the 19th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS '17) · doi:10.1145/3132525.3132527
Summary
This paper explores the use of Participatory Design with Proxies (PDwP) as a methodology for including children with severe communication limitations in the design of digital technologies. PDwP is a variation of participatory design where people familiar with the target users — such as parents, teachers, and Speech-Language Pathologists (SLPs) — serve as proxy design partners, providing domain knowledge and interpreting user behaviour when direct communication with users is severely limited. The researchers applied PDwP to design Rafigh, a digital living media system that combines a living mushroom colony with an embedded computer and irrigation system. The system motivates children with disabilities to use therapeutic and learning applications: the more children use the target digital applications, the more water is dispensed to the mushrooms, resulting in visible growth over 10-16 days. The design process used a Research through Design (RtD) methodology and involved three iterative design cycles over multiple months. The first iteration involved SLP interviews and focus groups (5 SLPs) that identified five design themes: intervention-focused activities, engagement, customisation, context of use, and technological instantiation. Subsequent iterations involved in-situ deployments with three groups of child participants: a 4-year-old boy with speech delay (home school), two brothers ages 10 and 13 on the autism spectrum (home), and two 13-year-old non-verbal girls with cerebral palsy (school). Three progressively refined functional prototypes were built and deployed as design probes in participants' actual home and school settings.
Key findings
The PDwP approach revealed several important strengths for designing with children who have limited communication. First, it overcame logistical and privacy barriers inherent in evaluating ambient systems in home and school contexts — adult proxies could report on children's interactions over extended periods without disruptive researcher visits or video recording. Second, proxies provided insight into the system's impact beyond the immediate user and context of use; for example, a mother reported that the prototype increased communication between siblings and stimulated conversations with relatives, and a school psychologist noted it sparked interactions with other students and teachers not involved in the project. Third, having concrete functional prototypes rather than abstract discussions was essential — children engaged more meaningfully with physical objects they could touch and explore. However, the approach also revealed significant shortcomings. Proxy input is not necessarily representative of actual users' experiences and may be influenced by proxies' own biases. The researchers found it critical to verify proxy-reported data through direct observation and quantitative measures whenever possible. Additionally, developing the communication protocols needed to interpret children's non-verbal responses required significant time and specialised expertise. In the school deployment, both non-verbal children with cerebral palsy used the target scanning application almost twice as long (P5) and three times as long (P6) when Rafigh was present compared to the application alone.
Relevance
This paper addresses a fundamental challenge in inclusive design: how to meaningfully include users who cannot communicate directly with researchers through conventional means. For accessibility practitioners, PDwP offers a structured framework for situations where direct user input is impossible or severely limited — not just children, but potentially adults with significant cognitive or communication disabilities. The key lessons are practical: always triangulate proxy reports with direct observation and quantitative data; deploy prototypes in real contexts of use rather than labs; use concrete functional prototypes to facilitate engagement from users with cognitive disabilities; and recognise that proxies reveal system impacts that extend beyond the individual user. The living media concept is also noteworthy as an innovative approach to sustained engagement — connecting digital therapeutic activities to visible real-world growth addresses the common problem of children losing interest in repetitive exercises. Limitations include the small number of participants and the inherent tension between proxy representation and authentic user voice.
Tags: participatory design · children with disabilities · communication accessibility · augmentative and alternative communication · design methodology · autism spectrum disorder · cerebral palsy · speech delay