The Impact of Participatory Design on the Wellbeing of Individuals with Autism

Background: Participatory design (PD) methods have been used to facilitate individuals with autism contributing to the design of assistive technologies. Through appropriate structuring of the PD sessions, the likelihood of developing feasible and accessible technologies that are relevant to users’ life worlds is increased. However, challenges remain regarding the integration of these design protocols in regular health care practice and regarding the value of PD in relation to how outcomes of projects are evaluated. Singular measuring instruments do not prove to be decisive, given the complex embedding of assistive technologies in the social life of its users and the multidimensional character of wellbeing.

Objectives: To provide an integral and multidimensional understanding of what constitutes a successful outcome of participatory designed assistive technologies, by means of an evaluation suite in which newly developed technologies are co-evaluated for and with individuals with autism and their caregivers.

Methods: Four separate assistive technologies were evaluated with a group (N=28) of young adult individuals with autism. These include: I) a mobile application called ‘TasKing’, that helps with fulfilling everyday chores, II) the M-Power tablet that helps people with face-to-face conversations, III) the OOC stress pillow that helps with stress relief by means of a tactile heartbeat inside the pillow, IV) the Tinybot, a robotized planning assistant. Drawing on concepts from the Capability Approach (Nussbaum, 2011; Sen, 1999), realistic evaluation (Pawson & Tilley, 1997) and Actor-Network Theory (Latour, 2005) we designed an evaluation suite consisting of a narrative interview, an actor-network map, quality of life questionnaires, practitioner log entries and user-experience/ usability checklists. These data were aggregated during several ‘community of practice’ meetings.

Results: Results will be presented from the evaluation of the four co-designed assistive technologies. The separate components of the evaluation suite provide us with a combined collection of subjective and objective effects on the wellbeing of the participants involved and the implications of participatory design processes on day-to-day care. Data from narrative interviews clarify subjective feelings of wellbeing, actor-network maps visualize the embedding of the technologies in the participants’ life, quality of life questionnaires provide for quantitative data on quality of life domains (Schalock, 2000), practitioner log entries are deployed for mapping the actual use of the interventions following the CIMO-logic (Context, Intervention, generative Mechanism, Outcome), and usability checklists are used to gauge common usability aspects of the intervention.

Conclusions: This study will contribute to the understanding of what constitutes a successful outcome of participatory designed assistive technologies by emphasizing on the multidimensional aspect of human wellbeing as well as on the implementation of these design and evaluation protocols in everyday care.