Disability Studies Guide

Review of 96 publications on patient-reported outcome instruments used in research with children/youth with conditions associated with facial difference.

Disability studies as an academic field has long sought to highlight the lived experiences of people with disabilities, thereby giving voice to a population that has been the object of much discourse but rarely its subject. Despite the field’s engagement with various conditions, there is limited scholarly work on the personal meanings of amputation and prosthetics usage. Experiences associated with the loss of part(s) of the face, in particular, have remained uncharted.

The impact of paediatric upper limb difference may extend beyond the child themselves to their parents and other family members. Previous research has found that feelings of shock, numbness and loss are common amongst parents and that peer support can be a buffer against stress. OBJECTIVE: The current study aimed to explore the experiences of parents of children with limb difference, and the role of services and prosthetic devices in these experiences.

Upper-limb prostheses are regularly abandoned, in part due to the mismatch between user needs and prostheses performance. Sensory feedback is among several technological advances that have been proposed to reduce device abandonment rates.

With the rapid development of computer science and technology, especially the advent of the 5G network era, the emergence of smart prostheses makes it possible for disabled, injured, or amputee people with lower limbs to walk and exercise like typical people. However, due to the different selection of prosthetic materials, the final lower limb prostheses produced will also have different performance differences.

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.