JMIR Publications

ABSTRACT

Background:

Deciding whether and how to disclose one’s autism at work is complex, especially for autistic youth and young adults who are newly entering the labour market and still learning important decision-making and self-determination skills. Autistic youth and young adults may benefit from tools to support disclosure processes at work; however, to our knowledge, no evidence-based, theoretically grounded tool exists specifically for this population. There is also limited guidance regarding how to pursue the development of such a tool in collaboration with knowledge users.

Objective:

To codesign a prototype of a disclosure decision-aid tool with and for autistic youth and young adults; 2) to explore the perceived usability of the prototype (usefulness, satisfaction, ease of use) and make necessary revisions; 3) and outline the process used to achieve the preceding objectives.

Methods:

Taking a patient-oriented research approach, we engaged four autistic youth and young adults as advisors on this project. Prototype development was guided by codesign principles and strategies, and tool content was informed by a prior needs assessment led by our team, the advisors’ lived experiences, considering intersectionality, research on knowledge translation (KT) tool development, and recommendations from the International Patient Decision Aid Standards. We codesigned an online interactive PDF prototype. To assess perceived usability and experiences with the prototype, we conducted four participatory design / focus group Zoom sessions with 19 Canadian autistic youth and young adults, aged 16-29 (mean age 22.8 years). We analyzed the data using a combined conventional (inductive) and modified framework method (deductive) to map data onto usability indicators (usefulness, satisfaction, ease of use). Grounded in participants’ feedback and considering factors of feasibility, availability of resources, and ensuring tool fidelity, we revised the prototype.

Results:

We developed four categories pertaining to perceived usability of and participant experiences with the prototype: 1) past disclosure experiences, 2) prototype information and activities, 3) prototype design and structure, and 4) overall usability. Participant feedback was favorable and indicative of the tool’s potential impact and usability. The usability indicator requiring the most attention was ease of use, which was prioritized when revising the prototype. Our findings highlight the importance of engaging knowledge users throughout the entirety of prototype codesign and testing processes, incorporating codesign strategies and principles, and having content informed by relevant theories, evidence, and knowledge users’ experiences.

Conclusions:

We outline an innovative codesign process that other researchers, clinicians, and KT practitioners may consider following when developing KT tools. Through this, we also developed a novel, evidence-based, theoretically informed, online disability disclosure decision-aid tool that may help autistic youth and young adults navigate disclosure processes and improve their transitional outcomes as they enter the workforce. Clinical Trial: N/A