MND is a devasating progressive neurological disease, with wide ranging effects upon the body. Nutrition is key, as MND often affects the ability to eat and swallow, leading to weight loss, choking and possibly chest infections.
People may be offered a feeding tube to assist with getting adequate nutrition, but this can be a very daunting choice to make. Sheffield Institute for Translational Neuroscience (SITraN) were determined to find out what factors may lead to people delaying or refusing to have a feeding tube, and led a nation-wide research project asking how this can affects people's lives.
myTube addresses the problem of how to make sure the results of this research are shared with the people who need it most - patients and carers? SITraN invited us to facilitate a series of co-design workshops with patients, carers and clinicians to discuss and prioritise the findings, and determine the structure and content of this new online resource. Through portaying their everyday lives on film, their experiences bring to life these research findings, reclaiming academic knowledge for everyday use.
Working closely with Ammba and Design by Glass (design and coding), we project managed and developed the video and written content, and oversaw the content review process in close liaison with co-funder the Motor Neurone Disease Association.