Patients and carers shared their insights into difficult care decisions they have faced in living with Motor Neuron Disease and made a pragmatic, honest and personal video resource website to inform others thinking about tube feeding in case of compromised eating and swallowing. The patients and carers took the research done at SITraN by Prof Chris McDermott’s team and made it real and relevant to everyday life for those affected by MND.
The myTube team included patients and carers and past members of the South Yorkshire MND Association and members of the Sheffield MND Research Advisory Group of patients and the public, SITraN researchers, and Registered Nurse filmmaker and videographer Cathy Soreny to record patient stories about having a Percutaneous endoscopic gastrostomy (PEG) tube fitted. From thinking about it, deciding to have it, deciding not to have it, and the practical reality of living with and caring for someone with a gastrotomy feeding tube, a wealth of lived experience is conveyed in the collection of short videos on the user-friendly website (web design by Ammba Digital).
The myTube team had this to say:
“The whole MyTube Team are very pleased to accept this Award from Complete Nutrition. It is great recognition of not only the final resource, but also the methods used during its development. The current evidence about decision making prior to having a gastrostomy feeding tube placed was interpreted and presented under the expert guidance of our patients living with Motor Neurone Disease (MND) and their families. The collaborative process followed, allowed the relevant clinical information to be translated through the words of the patient themselves in a series of short films. We are so pleased that the health professionals who have voted for MyTube recognise the value of this resource, and we hope that they will continue to recommend it to patients living with MND who are making the decision about gastrostomy tube placement.”
The myTube website is great example of what can be achieved to benefit patient's and carer's lives through their involvement in research, providing a great, independent online resource for those facing a similar challenge.
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