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Towards Including End-Users in the Design of Prosthetic Hands: Ethical Analysis of a Survey of Australians with Upper-Limb Difference

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Abstract

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 prosthetic—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.

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Notes

  1. The ARC funds ACES but researchers at Australian universities were responsible for recruiting the survey participants.

  2. Some of the below results have been reported elsewhere with a focus on engineering implications (Stephens-Fripp et al. 2019). Other research on the ACES prosthetic hand is reported in, e.g., Young et al. (2019), Zhou et al. (2019), Tawk et al. (2019).

  3. We will use ‘non-use’ to acknowledge that some people do not reject or abandon prosthetics but rather find no need to use one. As we aim to show below this is not always due to design problems although this is commonly assumed.

  4. This response typifies an assumption evident in engineers’ approaches to perfect existing designs.

  5. Perhaps in recognition of these issues, some small exploratory studies have examined ways to investigate user experience and preferences more deeply (Schaffalitsky et al. 2009; Sansoni et al. 2016; Hofmann et al. 2016; Hussain and Sanders 2012).

  6. In addition, several questions were included of relevance to the specific designs being developed at ACES; these results are reported elsewhere (Stephens-Fripp et al. 2019).

  7. This would have been encouraged by the phrasing of the question on what problems participants had experienced with prosthetics. However, identifying particular problems of the prosthetic was also the dominant way participants explained non-use or changing the type of prosthetic used.

  8. These were either state-based artificial limb schemes (61.5%), or the federal National Disability Insurance Scheme (NDIS) (15.4%). The NDIS is currently being rolled out across Australia and will eventually replace state-based schemes.

  9. Program details differ by state or territory, but typically limit expenditure to around $5,000-$8,000 every two-to-three years (Limbs4Life 2010). The NDIS does not impose a specific ceiling but allocates funds on a case-by-case basis. There are various ethical issues to consider here in relation to justice in resource provision (Limbs4life 2010). We leave these aside here since our primary focus is on user recognition in design.

  10. Whilst Sansoni et al. interviewed prosthetic users, the sample included people without limb difference, at a proportion of 21% (limb-different) to 79% (non-limb-different). As such, the results for preferences are skewed to non-users of prosthetics. Interestingly, their study showed that most amputees “express attraction to devices with an interface dissimilar to a real limb” from which they concluded “there might be a characteristic in amputees that leads them to be attracted to non-realistic devices” (78). While we do not find it helpful to speculate on limb-different versus non-limb-different people’s preferences, it should certainly not be assumed that lifelikeness is always preferred.

  11. This might be achieved in several ways, including by allowing people to own more than one prosthetic for use at different times, via cost reduction.

  12. It is worth noting that such problems may reflect issues in fitting and rehabilitation services, rather than design issues. However, at least some factors that lowered the value of prosthetic use for participants could potentially be overcome with innovative technologies or designs.

  13. Whilst most studies assume a gender binary, Grant’s analysis brings a queer lens to the discussion. Preferences will also vary by culture both for look and with social understandings of disability and prosthetics (e.g., Hussain and Sanders 2012). Prosthetic design often ignores such differences.

  14. Parens places ‘enabling flourishing’ in a similar role, to incorporate both perspectives – the medical and social models of disability – within a binocular approach. While we do not disagree that considering people’s flourishing is useful, even perhaps the most useful focus in some questions, we think fostering autonomy is a more useful overall goal in relation to the specific purpose of prosthetic design, since it builds in consideration of individual choice.

  15. Or as we might alternatively phrase it, ‘social technologies’ (Clarke 2016).

  16. This has implications for prosthetic provision, since it implies that abilities can depend on how well one’s social environment enables access to tools that support abilities. We focus here though on design.

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Acknowledgements

Research for this project was supported by the Australian Research Council Centre of Excellence Scheme (Project Number CE 140100012). The authors would like to thank Denny Oetemo, Alireza Mohammadi, Peter Choong, and Susan Dodds. Our special thanks to Darrel Sparke of Amputees NSW and Melissa Noonan of Limbs 4 Life, as well as members of both organisations, for invaluable assistance in developing and disseminating the survey.

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Walker, M.J., Goddard, E., Stephens-Fripp, B. et al. Towards Including End-Users in the Design of Prosthetic Hands: Ethical Analysis of a Survey of Australians with Upper-Limb Difference. Sci Eng Ethics 26, 981–1007 (2020). https://doi.org/10.1007/s11948-019-00168-2

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