We are taking part in a study aimed at improving support for the families and informal carers of people diagnosed with Motor Neurone Disease. 

The hospice is helping in the process of recruitment of family members or informal caregivers for a virtual peer-to-peer support programme. 

Academic

The research programme is being co-sponsored by Guys and St Thomas’ NHS Foundation Trust and King’s College London, and the results of the study will be published in a peer reviewed journal and will also be presented at academic conferences. 

To be eligible to take part in the project, respondents must be aged over 18 and be family or the informal carer of someone with MND: who is being considered for or receiving help with their breathing or coughing or who receives food via a tube. They must also be able to speak and read English and have access to the internet. 

Researchers have developed an App which delivers a 12-week online support programme.  

Random

If any of those contacted agree to take part, they will then be chosen at random to either access the App allowing them to communicate with their peer supporter by text, audio or video or receive the usual support available from the Motor Neurone Disease Association. 

Researchers believe that the peer-to-peer support will provide emotional and informational support between people who have the same shared experiences. 

Wider understanding

Dr Claire Stockdale, our lead consultant on MND said: “We have been asked to make initial contact with caregivers and families of those diagnosed with MND and I believe this research programme will provide a wider understanding of the effects the disease can have on the loved ones of those diagnosed. 

“Sometimes caregivers can be forgotten in the weeks and months immediately following a diagnosis and I believe that this pilot study will illustrate how vital peer-to-peer support is. 

Support

“Initially we will contact people and ask them if they would like to take part in the study. If they agree, researchers will contact them and either match them with a peer supporter or give them access to MNDA support.  

“Not only will these peer supporters have similar experiences, but they will also be trained as a volunteer for either Marie Curie or the MND Association.” 

The trial, which is funded by Marie Curie and the MND Association, is due to start imminently. You can read more about it here. Alternatively, email claires@severnhospice.org.uk