Coping And Living well with MND (CALM) study

Evaluating the usability, acceptability and engagement of the CALM (Coping And Living well with MND) intervention.

There is an urgent need to develop more psychological interventions to support the psychological needs of people with MND and the overall aim of this PhD project is to develop and evaluate a psychological intervention to support people with MND.

Researchers at the University of Southampton have made a website to help people with MND and family members deal with the emotional impact of MND (e.g. feeling worried, sad, angry, hopeless, or overwhelmed). The website aims to help people to find ways to cope with these emotions and feel a little happier, calmer and more positive.

This research study will ask people with MND and their family members for feedback on the early drafts of this website. We will then make changes to the website so that it is as helpful and easy to use as possible.

We are interested in talking to people who may be struggling with difficult thoughts and feelings. We are also interested in talking to people who are doing okay emotionally right now.

What does taking part involve?

Phase 1: For this study you will be shown a website that has been built to help people deal with the emotional impact of having MND.

You will need a computer or tablet to access the website. We would then like to interview you about your thoughts on the website and how we have designed it. The interviews can be done by phone or video call.

If you have difficulty talking but would still like to take part, please contact the researcher who will include you in the next stage of the study that will ask for written feedback.

You will also receive a £10 Amazon voucher for taking part in the study.

Study location

UK-wide

Who can take part?

People with MND and family members, who must be:
• 18 years of age or over,
• fluent in English,
• do not have severe communication difficulties (unable to be interviewed in either a spoken/written format).
• Caregiver participants must be currently caring for someone with MND.

How can I take part?

To take part in this study, please contact the researcher below.

Contact

If you are interested in taking part or would like more information about the study, please contact Cathryn Pinto, PhD researcher at the University of Southampton (Email: C.L.pinto@soton.ac.uk) Telephone: 023 8059 6652).

Funding

Motor Neurone Disease Association

Expiry date: 31 May 2021

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262