DiAMoND: decision aid for people living with MND considering gastrostomy

Developing and pilot testing of web-based decision aid 

The aim of this project it to develop a web-based decision aid (DA) to help people with MND decide whether to have a feeding tube fitted. A DA presents accurate and reliable information, clearly explains the risks and benefits associated with each possible choice and checks understanding. As well as educating, DAs also help people understand what is most important to them, which supports people to make decisions that fit their values. A web-based DA gives people control about the information they are ready to see, allows them to revisit information and can include links to other reliable sources of information. As the DA will be web-based, the final version can be shared widely, ensuring that it reaches the people and organisations who need it most.

What does taking part involve?

Participants will be invited to take part in one interview and then complete two surveys over a period of one year. The interview and surveys will be arranged at a date and time that are convenient for you.

During the interview we will ask about:
• your relevant experiences
• information that was (or might be) important to you to support the individual you care for or work with, in making the decision about whether to have a gastrostomy
• what a decision aid (DA) might consist of and look like
• when it would be most useful to share a DA with individuals living with MND and their carers

Study location

UK-wide

Who can take part?

• Carers of people living with MND
• Healthcare professionals working with people living with MND, involved in supporting the gastrostomy decision-making process

How can I take part?

If you are interested in taking part, please contact the DiAMoND study team at diamond@soton.ac.uk or 02380 597939 .

Funding

This study is sponsored by the Motor Neurone Disease Association and Marie Curie.

Expiry date: 01/11/2019

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262