Motor Neurone Disease (MND) is a neurodegenerative disease that has no cure. It progresses rapidly and relentlessly causing loss of abilities such as walking, talking, swallowing and eventually breathing. Sadly, people often don’t live for more than a few years after diagnosis.
Not surprisingly, many people with MND and their family members experience emotional distress. The symptoms, disability and the day-to-day burden of managing MND and patchy NHS provision of psychological services means that they often can’t access psychological interventions.
The Motor Neurone Disease Association (MNDA) funded me to supervise a three year research programme developing an online self-help website (CALM; Coping and Living with MND). CALM brings together a collection of techniques used in psychological therapies. We tailored everything to be suitable for the specific needs of people with MND (and their family caregivers). We completed in-depth interviews with patients and caregivers, conducted an extensive literature review, then formulated ‘Guiding Principles’ that articulated how to ensure CALM was engaging and acceptable to this particular user group and context.
After building a prototype version of CALM we continued to work with people with MND and their family caregivers to improve and refine it. We used ‘think-aloud’ interviews, written feedback and interviews with people who had tried it at home for a few weeks. We established that people with MND find CALM acceptable, engaging and helpful. We then ran webinars with health professionals to gauge their interest in signposting their patients to CALM available and planned out pathways to roll it out.
It's very helpful knowing that this stuff is all there, for when you get in such a state that you can't think for yourself really. (‘Elaine’, Family Caregiver)
I found it helped me through a tough time I was having recently when I was introduced to RIG tube feeding and experienced adverse side effects. (‘Jane’, Person with MND)
The Motor Neurone Disease Association (MNDA)
Public Engagement with Research Unit, University of Southampton
Dr Cathryn Pinto1
Dr Adam Geraghty1
Prof Lucy Yardley1,2
Prof Francesco Pagnini3
- University of Southampton
- University of Bristol
- Universita Cattolica del Sacro Cuore, Italy.