Testing a peer-to-peer support programme for caregivers of people living with MND.
Principal Investigator: Prof Louise Rose
Lead Institution: King's College London
MND Association Funding: £136,696*
Funding dates: November 2021 - October 2024
*Funded in partnership with Marie Curie and supported by the Hollick Family Foundation.
About the project
Family caregivers of individuals with MND can experience exceptional burden and significant decline in psychological wellbeing due to MND’s profoundly debilitating effects and intensive support needs. Dependence on assistive technology adds a level of complexity due to the need to learn how to operate and troubleshoot medical devices, train other caregivers, and negotiate appointments with new specialties within the healthcare system. Despite the recognised impact of caregiving, data are scarce as to effective interventions that provide direct practical and psychosocial supports. Peers, people who have experienced the same health problem and have similar characteristics as support recipients, can be a key source of emotional, informational, and affirmational support.Online peer support is a flexible, more accessible and low cost form of support. Although peer support programmes for family caregivers of people with MND exist, data as to their efficacy are limited. Therefore, this study has developed an online peer support programme, completed beta and usability testing and now propose to test the effect on caregiver psychological wellbeing and caregiver burden.
What could this mean for MND research?
The development of additional support for caregivers of people living with MND will hopefully help to improve the wellbeing of carers. This peer support project will bring together those who have been through similar experiences and hopefully be able provide this additional support. This project aims to test the effectiveness of this new programme and if successful could be used regularly by caregivers.
Resources
Take part in this research
This research study is currently recruiting participants. Click the button below to find out more about the study and if you are eligible to take part.
Project code: 964-794
