If you take part, it will involve completing two interviews 3 months apart and, if you wish, keep a diary in between the interviews. The study has been designed so that you can take part at your own pace, from home and in a way that suits how you prefer to communicate at the time. So, interviews can be completed by post or email, direct messenger app, phone/video call or in person (if Coronavirus restrictions allow). You may also use different ways to keep the diary so it could be a spoken/video diary, photo diary, written diary or a mixture of all three. Nicola will discuss the various ways to take part with you and help you choose which you prefer. You may change the way you take part at any time, for example you may initially suggest a phone call for an interview but then decide you would prefer to do this by email.
If you decided to complete an interview by telephone or video call this would take no more than 45 minutes of your time depending on your choice and what you would like to say. The diary is not intended to be a daily diary and you can make entries as frequently or as little as you wish such as once a week or less.
At the end of the research, you will be invited, if you wish, to take part in a workshop with healthcare professionals, carers, people living with MND and other stakeholders where we will present our findings and discuss how these results can be used to make a difference to the future healthcare of people living with MND and make suggestions for future research. You are under no obligation to take part in this workshop.