Health benefits of non-invasive ventilation (NIV) in MND: the psychosocial and physical impact on people with MND and their carers

Description:

What this research means to you: MND can lead to difficulties with breathing. Non-invasive ventilation (NIV) is known to alleviate these symptoms and can prolong survival in patients with Motor Neurone Disease (MND). However little is known about the long-term psychological consequences of NIV use. This project aims to examine the impact of NIV on both patients and carers and will investigate how their attitudes towards NIV change over time. An understanding of these issues is essential if clinicians and patients are to make the best decisions about NIV.

The researcher explains in more detail: It has been shown that NIV extends survival, addresses symptoms associated with respiratory muscle weakness and can improve quality of life and mental alertness. However, NIV does not stop the disease from progressing and as other symptoms manifest, the attitudes of both patient and carer may change, to the extent that NIV may become a burden and patients may wish to discontinue use. The long-term impacts of NIV on patient and carer have not been studied and without an understanding of these issues, good practice cannot be developed.
We propose to follow the experience of people with MND and determine the true impact of NIV. Through the use of serial interviews, we aim to explore changes in how people with MND and their carers perceive NIV as the condition progresses. Given the likelihood that NIV will become more commonplace, the insight gained through this study will be essential if our decision-making around this vital intervention is to be evidence based.