Living with MND: an internet resource for people affected by MND, their families and carers

Description:

What this research means to you: This project aims to record interviews about people’s experiences of living with MND and include the resulting video and audio clips in a new website. The site will also include other features such as an online forum and should ultimately provide people affected by MND and healthcare professionals with a valuable information resource.

The researchers explain in more detail: The purpose of this project is to develop a website (as part of the award-winning www.dipex.org) based on video and audio recorded interviews with people affected by MND. A researcher with many years experience of sensitive interviewing has interviewed 40 – 50 people with MND and 10 carers in their own homes. The interviews will provide the material to develop a website of patient experiences. This website will include 25 short summaries describing the main issues that are important to people affected by MND, for example managing speech difficulties, effect on relationships, coping with progressing disability and accessing information. Each summary will be illustrated with video, audio and written clips from the interviews. The website will also link to further sources of information, a web forum for people with MND and will provide answers to commonly answered questions. This site will provide people with MND, their carers and families with a balanced, comprehensive and extensive resource of others’ experiences. It will also be widely used to educate doctors, nurses and other health professionals about people’s experiences of health and illness.