RESUMO
Health disclosure at work is complicated for people with invisible chronic conditions. Due to the lack of visible symptoms, invisible conditions affect the work life of people in ways that are not obvious to others. This study examines how people disclose and conceal their conditions in the workplace and opens the design space for this topic. In the first phase, we analyzed posts on two subreddit forums, r/migraine and r/fibromyalgia, and found a range of strategies that individuals use to disclose or conceal their conditions. In the second phase, we created five technological design concepts based on these strategies that were shown to eight people with migraines or fibromyalgia in semi-structured interviews. Based on these phases, we contribute understandings of disclosure and concealment of invisible conditions in the workplace for future research, such as potential areas for intervention ranging from individual to societal level efforts, as well as the potential and limitations of relying on empathy from others.
RESUMO
User-centered design is typically framed around meeting the preferences and needs of populations involved in the design process. However, when designing technology for people with disabilities, in particular dementia, there is also a moral imperative to ensure that human rights of this segment of the population are consciously integrated into the process and respectfully included in the product. We introduce a human rights-based user-centered design process which is informed by the United Nations Convention on the Rights of Persons with Disabilities (CRPD). We conducted two editions of a three-day-long design workshop during which undergraduate students and dementia advocates came together to design technology for people with dementia. This case study demonstrates our novel approach to user-centered design that centers human rights through different stages of the workshop and actively involves people with dementia in the design process.