myNIV and myTUBE - Developing practical resources for people with Motor Neuron Disease

For people with motor neuron disease (MND) and their carers, living with this incurable, severely debilitating condition is a complex and deeply challenging experience. At SITraN, Dr Chris McDermott and his team have spearheaded a range of research programmes exploring the benefits of interventions in MND that can provide symptomatic relief.

One of these interventions is non-invasive ventilation (NIV) where slightly pressured air is delivered into the lungs through a face mask. NIV has been shown to prolong life and improve the quality of life of people with MND whose breathing is affected. Although NIV can be an effective treatment, Dr McDermott’s team found that many patients struggle to use it. 

Cathy Soreny, a filmmaker and designer, tells us about how her team have worked with SITraN to develop an online resource for people using NIV, to help them with practical issues and make NIV work for them: 

Non-invasive ventilation (NIV): Air is delivered through a face mask directly into
the lungs to support a person’s own breathing.

Working with patients and carers to design online support tools for MND.

Early in 2014, Chris invited us as filmmakers (Optical Jukebox) and digital designers (Ammba Digital) to work with MND patients and carers and record their experiences of using NIV. Over four workshops with patients, their carers and past carers, we were able to explore the advantages of using NIV, but also the challenges and practical solutions in great depth.

Our approach means we merely facilitate the group and then channel the ideas and insights of the group into designs, films and how-to guides. These are shown back to the group for in-depth critique. Across the workshops our working relationships developed and we were challenged deeply on many aspects, resulting in much improved designs. The web resource myNIV was launched in October 2014, and has been used by many patients within the region, but also across the UK and internationally. The website has a mix of bite-sized written information, concise how-to videos and photo guides, and people’s personal stories of using NIV. 

myNIV – A new web resource for people living with MND

www.mymnd.org.uk

Following on from the success of myNIV, now in February 2016, this collaborative process is starting again, but this time to provide advice on nutrition management in MND. Feeding through a tube in the stomach (gastrostomy) is commonly used to support MND patients who have severe difficulties with swallowing. Recent research has shown that people with MND benefited most from tube feeding in terms of health and survival the less weight they had lost at the start. However, despite the potential benefits, having a feeding tube placed can seem a daunting step and prove challenging to use.

myTUBE – comprehensive advice on tube feeding in MND

We will consult patients, carers and healthcare professionals to work on a comprehensive resource on this topic for people living with MND. It will cover the decision process leading up to having a tube fitted, as well as the day-to-day challenges of using one. myTUBE will build upon what we learnt with myNIV, but not just stick to the same template. Funded by both the MND Association and the Westfield Health Charitable Trust (myNIV was also funded by the latter) we are aiming to develop a tool that dovetails with the MNDA’s existing guidance and adds additional dimensions.

Members of the first myTUBE workshop at work

At our first workshop, the group had a great creative dynamic, with thoughts tabled already about how it could be implemented across a variety of settings. They also made it clear that hearing the experiences of others is just as valuable to them as a recommendation from a health professional, and they want to hear both - so we will explore how we can make this a central feature, while still ensuring balanced and clinically accurate content.

The myTUBE workshops are running from February until June 2016, with the launch of the web resource planned in autumn 2016. If you would like to offer user feedback as this develops you can get in touch via the myNIV website, and also complete the short evaluation questionnaire on the myNIV website.

myNIV and myTUBE are part of the wider online and telehealth support tools for MND being developed at SITraN, myMND. 

By Cathy Soreny

Cathy Soreny is a filmmaker and photographer, with a convoluted career path. She worked as a registered nurse on Neuro Critical Care and then Opthalmic Outpatients before moving into health services research, with a post at the University of Sheffield.

Originally a fine art graduate, Cathy now combines her clinical, academic and creative skills to develop cross-media resources and films for the health and social care field. She co-founded Optical Jukebox in 2010 with long-standing friend and collaborator, filmmaker Emma Vickers. They collaborate with Ammba Digital to make digital resources for healthcare.

 

http://www.opticaljukebox.org/
facebook.com/opticaljukebox
vimeo.com/opticaljukebox

Ammba Digital http://ammba.co.uk/