Online tool to support CALM – Coping and Living with MND

Online tool to support CALM – Coping and Living with MND

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Guest researcher blog post written by Cathryn Pinto:

Cathryn Pinto photo
PhD researcher, Cathryn Pinto

I am a PhD student at the University of Southampton and my PhD project (titled CALM – Coping and Living with MND) is about the experience of emotional distress and wellbeing among people with MND and their family. Cathryn’s PhD studentship is funded by the MND Association.

From the moment I started my research and began talking to people, I realised you don’t have to dig deep to find out about how MND impacts people emotionally. People experience a range of emotions including anger, shock, hopelessness when they’ve been given a diagnosis that throws up so many questions and uncertainties about their future. Even after diagnosis, there are a number of different emotional issues to deal with as people try to cope with new symptoms and constant changes brought on by MND. The psychological side of coping with MND clearly important and we need to have more services to support people psychologically as well.

My PhD research hopes to provide one such avenue for psychological support. I am developing an online tool that people with MND and their family members can use for support and advice on coping with difficult thoughts and feelings, and ways to improve emotional wellbeing. Online tools for coping with emotional distress are needed even more in current times with increasing social isolation and additional worries and stresses due to the COVID-19 pandemic.

Improving emotional wellbeing can be challenging with a disease like MND. But I have been inspired by people I have met and they have shown me that it is possible to cope well psychologically, even when things are physically difficult.

My research usually involves talking to people with MND and their families and finding out about their experience. I was lucky to have been able to do this face-to-face before the COVID-19 pandemic. I still plan to speak to people and get feedback about my online tool, but will do so either by phone or video call in the next stages of the project. For the moment, I am continuing with my research as usual, analysing the data from my interviews with people with MND and their families, reviewing the literature, and using all this information to design the online tool for psychological support.

To find out more about the CALM study, please contact me via email or Twitter @CathrynPinto.

Take part in this research.

We’d like to thank Cathryn for taking the time to share the importance of her research and how it can continue during the current pandemic. 

  • Cathryn recently spoke about her project at an MND conference organised by our branch in Southampton and MedSoc students, read about this event here.
  • More information about the research we fund in 2020 can be viewed here.
The MND Association’s vision is a world free from MND. Realising this vision means investing more in research, further developing partnerships with the research community, funding bodies and industry, while ensuring that advances in understanding and treating MND are communicated as quickly and effectively as possible. Our Research Development team, composed of 11 members, work hard to achieve this. Principally, the Research Information team within this are involved in communication activities including this MND Research blog.