Empathetic design research and development in practice; co-development of an innovative head and neck support for people with Motor Neurone Disease

People with Motor Neuron Disease (MND) experience muscle weakness. The human head can weigh 5kg so when this happens in the muscles around the neck it can become very difficult to hold the head up and result in the head falling forward. The situation can lead to extreme pain, restricted movement, problems with eating, drinking, swallowing, breathing and importantly adversely affect face to face communication. Ideally, a neck collar would help alleviate these important quality of life (QoL) issues. Current neck collar provision can be of limited use for people with MND and are regularly rejected by users as often they are designed to immobilise the head and neck, and can be socially stigmatising. A fundamental reappraisal of the way these physical products are configured and used was undertaken. The project explored the use of open and empathic approaches to the co-design of solutions and further product designs role as developer and explorer of complex multidisciplinary, social and QoL issues. It demonstrates experts working openly together using a range of 'live' research practice methods to arrive at holistically considered optimum outcomes. The project was funded by the NIHR i4i program. The team consisted of clinicians, engineers and designers working with partners including people experiencing MND and their carers. Processes included a range of research through design methods at the heart of which was a series of ten, iterative, co-design workshops. The team developed mutual empathies between project participants. These played a key role in the motivation to reach appropriate solutions.