Prosthetics services in Uganda : a series of studies to inform the design of a low cost, but fit-for-purpose, body-powered prosthesis

The majority of people with upper limb absence (PWULA) live in lower, or middle-income countries (LMICs). However, efforts to develop improved prostheses have largely focused on electrically powered devices, sustainable deployment of which, in LMICs, is difficult. In the ‘Fit-for-purpose, affordable body-powered prostheses’ project, teams from the UK, Uganda and Jordan are developing mechanically-operated prostheses, optimised for LMICs, and establishing local methods for fabrication, fitting and evaluation. Here we first report on preliminary studies aimed at grounding the project in the reality of current prosthetics services and the experiences of people with limb absence in Uganda. Finally, we outline our ongoing work in the context of our findings. In our first two studies we reviewed current prosthetics and associated repair services. An issue which came up repeatedly was the difficulty faced by orthopaedic technologists in accessing componentry/materials. All specialised prosthetics components and materials are imported, often at a high cost. Purchasing does not appear to be well coordinated between centres, meaning potential economies of scale are not being fully exploited. Although there is supposed to be government funding for prosthetics, in practice budgets are often inadequate and a reliance on donations is common. The resource limitations mean Orthopaedic Technologists often resort to ad-hoc solutions; unsurprisingly perhaps, failures in prostheses were reported. In particular, lamination-based socket manufacture is very difficult, given the complexity (and cost) of the processes involved. Repair services are also limited, in part also due to problems accessing materials/components. Despite (or in part, as a result of) these challenges, the orthopaedic technologists are generally an extremely resourceful and multi-skilled group and there is genuine enthusiasm to see services improve. Further, there is a growth in interest and capabilities in the area of medical device innovation. In the third of our studies, we interviewed 17 PWULA and present preliminary results from the analysis of a subset of five participants. Firstly, we found that only 2 of the participants reported experience with using an upper limb prosthesis, again supporting the picture which emerged from the other studies. The findings illustrate the emergence of four key themes: a) attitude towards disability; b) barriers to prosthesis use; c) coping without a prosthesis; and d) communication with other PWULA. Although attitudes to those with limb loss varied, participants reported impacts in terms of social isolation and a mixed experience of emotions that appeared predominantly negative; barriers to prosthesis use were broader than just cost and functionality, and included a lack of training and psychological support; given that it is difficult to access an upper limb prosthesis, PWULA have found ways to perform daily life activities without relying on one; finally, most PWULA find the suggestion of communicating with other people with the same experience appealing. In our project we are addressing some of the issues found in the preliminary studies. To make socket manufacture less dependent on access to imported materials and specialised equipment, we are investigating the development of lattice-style, adjustable sockets, made from locally available materials. We are also investigating alternatives to the traditional harness-controlled, body-powered prosthetic hands. Given that clinicians have no objective means of evaluating the value of the prosthesis to their clients, we are testing the use of low-cost digital monitoring tools. We are also exploring the potential value of using mobile-phones to reduce the isolation of PWULA. Finally, we are exploring how these innovations may be translated into the Ugandan health setting