JMIR Publications

ABSTRACT

Background:

The digitalization of society has transformed daily life and healthcare, offering opportunities for accessibility and independence for people with complex care needs. However, users with limited digital skills still experience challenges because the technologies do not to align with their needs. Inclusive research and design approaches can improve technology by actively involving end users and stakeholders.

Objective:

This study investigated the experiences of co-researchers with a mild intellectual disability (MID) or autism spectrum disorder (ASD) and other key stakeholders over time regarding the inclusive design process for a digital tool for people with complex care needs, developed in a transdisciplinary consortium.

Methods:

The project that we examined applied an inclusive design process to develop a sensitive virtual assistant using the Vision in Design method and the Design Thinking approach. Nine consortium members, including 3 co-researchers, participated in semi-structured interviews and a group discussion about the inclusive design process after each of the project’s 5 work packages (WPs). This resulted in 31 interviews and 5 group discussions in total. We gathered individual experiences during interviews, and group discussions facilitated collective reflection. During the interviews, we used an adapted questionnaire for each WP with Likert scales and open-ended questions. The data analysis was conducted using a thematic approach and descriptive statistics for the questionnaire data.

Results:

Quantitative findings from questionnaires were complemented with qualitative insights from interviews and group discussions, with results presented chronologically per WP. The qualitative analysis resulted in 3 main themes: project approach, collaborative dynamics, and co-design in practice. Project approach showed how the team adapted its inclusive collaboration through expectation management, structured processes, and accessible materials. Collaborative dynamics described how communication and support evolved and how inclusive design principles were applied in practice. Co-design in practice outlined co-researcher involvement and content adaptations across the 5 WPs, highlighting how experiential knowledge directly informed design decisions. These findings show that inclusive collaboration developed over time and contributed meaningfully to both process and content.

Conclusions:

Our study shows that, to accommodate an inclusive research and design process, tensions between project efficiency and meaningful inclusion need to be addressed, underlining the importance of continuous coordination, collaboration, and flexibility in transdisciplinary settings. Further, applying a stepwise approach in inclusive collaborations supports coordination, continuous evaluation, and flexibility. Inclusive methods, like preparatory activities, clear role division, accessible materials, and iterative feedback, enabled active co-researcher participation. These methods contributed to a shift in ownership, allowing co-researchers to gain greater influence and co-shape both the development process and the content. The findings provide insights into how to enhance equity and relevance in inclusive technology design for people with complex care needs, such as people with MID or ASD.