Promoting universal health coverage for amputees in Uganda throughsocial enterprise and engineering innovation

Abstract

In many low-resource settings, upper-limb amputees encounter challenges accessing suitable prosthetic devices. This can lead to stigmatization, social isolation, and difficulty reintegrating into work and the community. Our prosthetics project combines engineering and social innovation to pilot decentralized models that make services available to amputees towards achieving universal health coverage. Specifically, we provide comfortable sockets and acceptable prosthetic hands to enhance upper-limb amputees’ confidence and task performance. Building upon previous co-design sessions with amputees, we conducted a pilot study to test new adjustable prosthetic socket technology designed for those with below-elbow limb loss. The emphasis on upper-limb amputees stems from their frequent neglect in the service provision system. Through these efforts, we aim to facilitate the reintegration of individuals into workplaces and communities.

Introduction

This project, funded by the Medical Research Council, was led by Robert Ssekitoleko from Makerere University in Uganda and Laurence Kenney from the University of Salford in the UK. Project assistants Benedict Mulindwa from Makerere University and Nicolaas Pickard from the University of Salford did the on-the-ground implementation. We evaluated the feasibility of implementing the Koalaa adjustable socket system for Ugandan unilateral below-elbow amputees. This off-the-shelf device proved promising due to its light weight, quick fitting process, and ease of use. We launched the study at Fort Portal Regional Referral Hospital in Uganda, where, in collaboration with prosthetists and representatives of amputee networks, we recruited upper-limb amputees for the pilot study. The assistants and prosthetists fitted the Koalaa devices and trained the amputees to use them for some daily tasks. The participants then returned to their communities and used the devices according to their needs while we monitored their activity. To address potential challenges, we implemented a peer-to-peer support system to assist participants with usage and repair scenarios. Monitoring the participants as they integrated the Koalaa system into their daily lives provided valuable insights for the project’s overall assessment.

Who should benefit?

A recent report by ATscale2030 indicated that 1.5 million people had amputations annually, with a global population of up to 65 million amputees, >80% of whom live in low- and middle-income countries (LMICs). Despite the recent global drive to improve equitable access to health services for people with disabilities, LMICs still lag behind. Over 30 million people in LMICs are believed to require prosthetic services, yet in some countries only 3% have access to them. The situation is even worse for people with upper-limb loss, as even in high-resource settings, rejection rates of devices are high. In Uganda, ~12.5% of the population aged five and over lives with some form of disability, with 35.3% having loss and/or limited use of extremities and the majority living in urban areas. Our previous study of the landscape of major limb loss and the availability of prosthetic services in Uganda found that upper-limb loss accounted for 14.2% and lower-limb loss accounted for 81.2% of the 634 patients who had undergone major-limb amputation between May 2015 and December 2021. The relatively low known prevalence of upper-limb loss likely contributes to the limited advancements in upper-limb prosthetics compared to lower-limb prosthetics globally, especially in resource-constrained settings. The delivery of well-fitting, comfortable sockets and acceptable prosthetic hands may positively impact patient confidence and ability to perform tasks; however, this is challenging, and rejection rates remain stubbornly high globally. Problems commonly reported by prosthesis users include the weight of devices and discomfort associated with the socket. There are also issues with limited availability and access to essential consumables required to make prosthetic devices in Uganda, which makes them expensive and repairs difficult. Recent innovations have shown the potential of adjustable sockets in improving access to and acceptance of prosthetic devices, as they are quick for technicians to fit and are adjustable by patients to accommodate changes in residual limb size or other comfort-related issues. 

This study explored the feasibility of introducing appropriate adjustable sockets and prosthetic hands for below-elbow amputees in Uganda, and whether this impacts the extent to which they participate in activities in their communities.

Engagement

Our study was a patient-focused, multi-phased process that prioritized ethical research and collaboration. We initiated participant engagement through prosthetists at Fort Portal Regional Referral Orthopaedic Workshop and representatives of amputee networks. We recruited eight amputees into the pilot study. The project assistants inducted participants into the study, explaining the research and allowing them to ask questions. Participants provided informed consent by signing the consent form. We prioritized data protection and participant rights to ensure ethical conduct throughout the research process.

The project assistants conducted onboarding interviews with amputees to understand their current activity levels and expectations of the Koalaa device. Participants were asked about their perception of limb loss. Subsequently, prosthetists fitted the Koalaa device, including an adjustable Koalaa socket, one passive hand, and two functional end-effectors. Participants were trained to take the socket and hands on and off, and were invited to wear monitors to track physical activities such as sitting, lying down, standing, and walking. The project assistants discussed results from the activity monitoring in subsequent meetings to improve participants’ understanding and inform study progression.

The engagement extended beyond workshop settings. To bolster the support system, two ‘limb buddies’—below-elbow amputees with prior Koalaa device experience—were recruited and trained. The limb buddies regularly checked in with study participants, providing peer-to-peer support.

The limb buddies also actively contacted participants to inquire about device adaptation in their communities and identify challenges. The project assistants maintained consistent communication, offering advice on device use and repair. Amputees occasionally proposed their own repair options, contributing to the research process. The research team organized visits to participants’ districts through amputee-network representatives. The research team also ensured ongoing communication by organizing biweekly meetings to discuss findings, assess the study’s progress, and integrate changes based on participant feedback. The iterative nature of the meetings facilitated a dynamic research environment responsive to the evolving needs of the amputee community.

Research

Limb loss is a widely recognized health challenge, particularly in LMICs, where access to prosthetic devices is hindered by barriers such as high costs, transportation challenges, and long distances to workshops in urban areas. In Uganda, the limited availability of essential consumables, such as plaster of Paris and machinery for prosthetic-device fabrication, exacerbates the issues, making devices expensive and repairs difficult. The wide range of hands, typically donated by overseas non-governmental organizations (NGOs) without any technical support, also contributes to the challenges. From previous interviews with people living with upper-limb absence in Uganda, we also found that amputation was associated with stigma, coupled with a desire (by some) to hide their disability or look ‘normal’. Many amputees have never had access to genuinely useful prosthetic devices. They reported a lack of confidence, leading them to avoid some social interactions due to comments from others who observed their limb loss. They also reported a lack of independence in performing tasks without the help of family members, and access to employment was a common and significant problem. These challenges informed the development of our study to introduce appropriate low-cost, adjustable sockets and prosthetic hands into the Ugandan prosthetics system. We aimed to bridge the gap between access to fit-for-purpose technologies and the availability of the service. Leveraging the established relationship between our research team and the Fort Portal Regional Referral orthopaedic workshop, we implemented the service. We assessed its feasibility and impact on users’ perspectives. The study explored users’ utilization of the provided support, including repairs, and the broader effects of having a prosthetic device on their daily activities, social interactions, and community integration. The research design incorporated the active engagement of amputees in activity monitoring and interviews over the 10-month deployment of the pilot study. Results indicated a positive impact on users’ confidence and comfort in interacting with their communities, leading to increased social engagement and integration. First-time users reported heightened confidence and said that their family members expressed satisfaction with the artificial hands, which facilitated a sense of normalcy within the community. Furthermore, we observed that users actively utilized the tools provided to perform daily tasks such as sweeping, washing, and sports.