The experiences of people with MND, and their caregivers, living with cough and secretion issues

Breathing issues are the most challenging and serious part of motor neurone disease (MND). This is because the muscles we use for breathing and coughing become weak which makes it difficult to breathe, clear the throat and swallow properly. Many people also struggle with excess saliva or mucus (secretion issues). While we don’t have the exact numbers of how many people with MND struggle to cough we do know from previous research by the team who wrote this paper, that it is a very common issue. Up to 70% of people with MND have excess saliva and mucus that has a big impact on their quality of life and makes it harder to use breathing equipment such as NIV (non-invasive ventilation) or cough-assisted machines.

Why is the study important?

There has only been a small amount of research that has explored the experiences of people with MND and their caregivers living with cough and secretion issues and management. This study begins the process of learning from the experiences of people living with MND and their caregivers to make sure that care plans are made to fit their specific needs.

What did the authors do and how did they do it?

The authors carried out interviews with 15 individuals (10 with MND and 5 caregivers). The interviews were analysed using a technique called thematic analysis which is a way of finding patterns in words and ideas. For example, if many people talk about relationships, daily impacts on the quality of life, or access to information in their stories, those are themes. This helps researchers understand what people are saying more easily.

Participants said that cough and secretion issues had a big day to day impact including the impact on talking to others and embarrassment of drooling in social situations and avoiding enjoyable activities. Participants said that high quality information helped them to make better decisions about their cough and secretion care, but they also found it overwhelming to discuss.

Most participants felt that non-specialist service providers had poor knowledge of MND and did not have the skills to support their cough and secretion issues. Providers did not understand the fast development of MND, meaning that access to support was not always available fast enough whereas specialist MND care centres were more likely to have teams with the right knowledge and skills which the participants appreciated. However, participants often found it difficult to access care centres due to tiredness and pain from travelling therefore many participants wanted to access specialist care closer to home or remotely. Patients also found it overwhelming and pressuring when coordinating their care as they must juggle multiple treatments and keep their medical team informed.

Participants appreciated the caregivers in their support in cough and secretion management. They are often the first responders at home, fixing issues as they happen. Seeing a loved one struggle to breathe or cough can be scary. Many caregivers want to learn as much as possible so they can help.

What do the findings mean going forward for people with the disease?

All participants felt that a tool made to support cough and secretion management was much needed and would make a huge difference in their care pathway and patient journey. This could be in the form of a specialised support system, a newly designed resource or adding remote check-ins and visual tools that connect easily with communication devices.

The results from this study also show that many factors need to be considered when supporting people with MND. Being quick to respond to their questions is a top priority because it makes them feel better supported. It is also important to train people with MND and their caregivers on how to use cough and secretion devices and medications which helps their confidence. Finally, because not every healthcare professional is an MND expert, we need better ways to improve how these professionals coordinate with each other.

It is important to teach more doctors, including GPs (General Practitioners) and hospital doctors as well as allied professional colleagues including specialist nurses, physiotherapists, occupational therapists and speech and language therapists, how to support those with cough and secretion issues, so that people living with MND get the care that they require.

Our regular contributor Dr Rick Nelms, from ‘Painting Without Brushes’ has produced a digital painting based on this lay summary. You can see this, and read about the background, here >>

This study can be found at https://www.tandfonline.com/doi/full/10.1080/09638288.2025.2555973#abstract

Paper title
Living with cough and secretion issues: the experiences of people with amyotrophic lateral sclerosis and their caregivers

Lead author
Charlotte Massey and Alys Griffiths

Publication details including date of publication
Research article published in Disability and Rehabilitation in September 2025