A Participatory Design Approach to Developing Upper Limb Prostheses for Children and Young People

Upper limb difference can have both a physical and psychological effect on a child, impacting on functional abilities and activity participation. Fortunately upper limb loss amongst children is a rare condition. This, however, has resulted in a ‘postcode lottery’ in the provision of services and a lack of clinical guidance. Research that has been conducted into children’s satisfaction with devices is scarce and has relied on parent proxy reports and quantitative measures. The views of children and young people have, therefore, not been satisfactorily explained. The views of parents and professionals are also vital to the improvement of services and devices, but are not well represented in previous research.

In order to ‘give voice’ to the users of paediatric upper limb prostheses and involve them in the development of new devices, a participatory design approach (the BRIDGE methodology), using focus groups and interviews, was taken.

The data was subjected to a number of thematic analyses, revealing the following:
•Children have an ambivalent relationship with prostheses and are dissatisfied with the devices available to them;
•Adjusting to having a child with limb loss is a difficult and complex process for parents and prostheses have a part to play in this process;
•Decisions regarding the prescription of prostheses are influenced by factors related to the client (child and parents), the devices available, and the institution/profession within which the prescriber works.

The findings supported previous assertions that prostheses for children need to be lighter, more comfortable, more useful and more attractive. Additionally, they should be safe, quick and easy to use, and natural (appearance and movement).

The findings have implications for clinical practice, device development and research with children. Approaches to assessment and treatment should move away from a medicalised view of using a prosthesis to ‘treat’ a ‘deficiency’ and should focus on the needs of the family unit. Device development needs to focus on task-specificity, modularity, comfort and weight. Finally, this study has demonstrated that children and young people can and should be involved as equal partners in the development of daily living equipment.