Towards including end-users in the design of prosthetic hands: ethical analysis of a survey of Australians with upper-limb difference

Advances in prosthetic design should benefit people with limb difference. But empirical evidence demonstrates a lack of uptake of prosthetics among those with limb difference, including of advanced designs. Non-use is often framed as a problem of prosthetic design or a user's response to prosthetics. Few studies investigate user experience and preferences, and those that do tend to address satisfaction or dissatisfaction with functional aspects of particular designs. This results in limited data to improve designs and, we argue, this is pragmatically and ethically problematic. This paper presents results of a survey we conducted in 2017 with people with upper limb difference in Australia. The survey sought to further knowledge about preferences surrounding prosthetics and understanding of how preferences relate to user experience, perspective, and context. Survey responses demonstrated variety in the uptake, use and type of prosthetics and that use of, preferences about, and impacts of prosthetics rely not just on design factors but on various contextual factors bearing on identity and social understandings of disability and prosthetic use. From these results, we argue that non-use of prosthetics could be usefully reframed as an issue of understanding how prosthetics can best support users' autonomy. This supports the claim that there is a need to incorporate user engagement into design processes for prosthetic limbs, though further work is needed on methods for doing so.