Dr Gita Ramdharry and her PhD student at University College London (UCL) will investigate a self-management intervention for people with neuromuscular conditions. The focus is on living well with a condition, not just the medical needs.
What are the aims of the project?
This project aims to explore how a self-management programme, called ‘Neuromuscular Bridges’, can be used by people with neuromuscular conditions.
Why is this research important?
Self-management programmes provide tailored information and resources, and support the individual to explore options, problem solve, set goals and take action. They can be tailored to an individual’s needs and preferences. This research will evaluate a tool designed to empower people to make choices about how they manage their condition and how to deliver this in a way that allows people to feel confident to self-manage.
What will the researchers do?
The research team will work closely with people with different neuromuscular conditions to develop ways to evaluate if Neuromuscular Bridges is an effective tool for self-management.
Dr Ramdharry and her student will first talk to individuals with neuromuscular conditions to find out how they would prefer to receive self-management support and what outcomes would be important to them.
Using this information, a small study to test Neuromuscular Bridges will be carried out at Queen Square Centre for Neuromuscular Disease, London. The clinical care team will be trained to deliver the programme and resources. The team will use questionnaires and interviews to assess if the self-management resources are effective, for example are they having an effect on the quality of life of the individuals, and hear from the participants what it was like to use the Neuromuscular Bridges resources.
Finally, the researchers will develop a plan for how Neuromuscular Bridges could be used and evaluated at other UK sites if it is found to be beneficial
Project leader: Dr Gita Ramdharry
Institute: University College London
Condition: All neuromuscular conditions
Duration: Four years
Total cost (£): 118,654
Official title: Evaluation of feasibility, effect and implementation requirements of a self-management intervention for people with neuromuscular diseases
Read more about Neuromuscular Bridges in our feature article
It is only through your contributions that we can continue to fund the vital work that takes us closer to finding treatments and cures for muscle-wasting conditions. Donate now and help change the lives of thousands of people living with these conditions. Thank you for your support.