Using technology to support caregivers of people with motor neurone disease
Pilgrims Hospices is working with researchers at King’s College London to help identify family caregivers of patients with motor neurone disease (MND) who might benefit from regular contact with a peer supporter.
Peer support is the provision of emotional and informational support from people who have experienced the same health problem and have similar characteristics to those receiving support. The peer support is a 12-week programme where the caregiver will have online contact with their peer supporter at least once a week, using an easy-to-use app called aTouchAway, very similar to WhatsApp.
Talking to a person who has been there, and is able to share their own experiences, offers real hope to individuals who may not have any at that particular point in their life.”A recipient of peer support
This study, funded by Marie Curie and the MND Association, is looking at the impact that caring has on wellbeing and aims to understand how user-friendly and acceptable the online peer support programme is to family carers in the study. As it is a randomised controlled trial, participants will be randomised to receive either the programme or their usual support.
Caregivers might be suitable to take part in the programme if they:
- Are 18 or over
- Are caring for someone with MND who is being considered for or receiving assistance for breathing, coughing or receiving feeding via a tube
- Are able to speak and read English
- Have access to the internet and a computer, tablet or smartphone
The team is also looking to train further peer-supporters to assign to a caregiver on the 12-week programme. They would be interested to hear from people who have had lived experience as a carer for someone with MND and feel they could offer this support to a current carer.
If you would like to find out more about the project, contact Charlotte Brigden, Research Facilitator on 01227 812 625 or email charlotte.brigden@pilgrimshospices.org.
Alternatively, you can contact the study team directly at: peersupport@kcl.ac.uk
