FAQs about using myTube

myTube has been designed to provide you with small chunks of information, in a flexible way. Read more about the best ways to watch/read the information on myTube. Also, you can find out who made it and what sources of information were used to develop it.

What’s on myTube?

myTube has a range of short videos and related text. These come under four main themes – Thinking, Fitting, Living, Caring – which can be accessed from the tabs/menu at the top of every page. You can pick and choose how you watch the films, or follow them through in chronological order using the yellow ‘next’ and ‘previous’ buttons.

How should I 'watch' myTube?

The site is very flexible, but we suggest watching just a few videos at a sitting. Don’t try to watch everything in one go – take your time! You may want to watch a film more than once, and include your family / carers. Allow time to reflect upon and discuss what you see, and how it relates to you and your own life.

Who decided what was included?

myTube has been designed and made in collaboration with people living with MND and their carers. They took part in several workshops that were facilitated by web designers and filmmakers. Clinicians who specialise in the care of MND also took part. Additional reviewing of the content and films was done by the MND Association.

Who is in the videos?

The myTube patient and carer team also appear in the films. They all have different stories about their feeding tubes, and are at various stages in their condition. In addition you will also hear from a Dietitian and a consultant neurologist who care for people with MND.

What is myTube based upon?

The themes and content of myTube are all based upon research undertaken in MND clinics around the UK – the ProGas study. This study asked people about their experiences of thinking about opting for a tube and what it’s like to live with one. It also tried to determine the safest time to have one fitted. Some additional research about feeding tubes in other conditions was also consulted. You can find a link a summary of ProGas and the other research below, and in External resources.

Across several co-design workshops, the myTube patient and carer team helped turn this academic research into a patient information resource, using everyday language and real-life settings.

Who made myTube?

myTube is part of wider project called myMND, bringing together different approaches for supporting people living with MND. This is being led by SITraN (Sheffield Institute for Translation Neuroscience), part of the University of Sheffield. The healthcare professionals taking part are part of or affiliated to the Sheffield MND Care and Research Centre. In depth feedback was given by the MND Association who helped ensure it met information standards.

Filmmaking and content: Optical Jukebox
Digital concepting: Ammba Digital
Logo, UI design & Coding: Design By Glass

With many thanks to everyone who reviewed the site and content across the process.

How can I get in touch?

If you have any questions or feedback about the myTube website please get in touch with the team info@mymnd.org.uk

Please note: for any clinical queries contact your own local care team.

What sources were used to develop myTube?

A range of research was used to develop myTube. This is the bibliography:

Brotherton, A., Abbott, J., & Aggett, P. (2006). The impact of percutaneous endoscopic gastrostomy feeding upon daily life in adults. Journal of Human Nutrition and Dietetics : The Official Journal of the British Dietetic Association, 19(5), 355–67 | Link

Brotherton, A., & Abbott, J. (2009). Clinical decision making and the provision of information in PEG feeding: an exploration of patients and their carers’ perceptions. Journal of Human Nutrition and Dietetics, 22(4), 302–309 | Link

Progas study group (2015). Gastrostomy in patients with amyotrophic lateral sclerosis (ProGas): a prospective cohort study. Lancet Neurol 2015 (14), 702–09 | One page summary | Full text

Stavroulakis T, Walsh T, Shaw P, McDermott C (on behalf of the PROGAS study) (2013). Gastrostomy use in motor neurone disease (MND): A review, meta-analysis and survey of current practice. Amylotrophic Lateral Sclerosis and Frontotemporal Degeneration. 14(2):96-104 | Link

Stavroulakis T, Baird W, Baxter S, Walsh T, Shaw P, McDermott C (2014). Factors influencing decision-making in relation to timing of gastrostomy insertion in patients with motor neurone disease. BMJ Support and Palliative Care. 4(1):57-63 | Link

Stavroulakis T, Baird W, Baxter S, Walsh T, Shaw P, McDermott C (2016). The impact of gastrostomy in motor neurone disease: challenges and benefits from a patient and carer perspective. BMJ Support and Palliative Care. 6(1):52-9 | Link

In addition, the other sources used are listed in External Resources.