This study is about the care of people with motor neurone disease, specifically the challenge in managing problems related to swallow and breathing. We will explore the complexity of managing this problem by reviewing existing research , and working with patients and carers to develop tools to support decision making.
Background
Motor neurone disease (MND) is an incurable disease leading to muscle weakness that worsens over time. Many people with this condition experience weakness in muscles involved in speech, swallowing, breathing, and coughing. For some, this makes it difficult to swallow saliva when it is produced in the mouth, leading to drooling, or choking. It also means that when mucous needs to be cleared from the chest or throat, it is hard to cough this up. In this study we use the word “secretions” when we talk about problems with saliva or mucous. Several treatments are used to help with these problems, but we don’t know what treatment is best. We know that MND can affect people in lots of different ways, but we don’t know how individual factors might influence whether a treatment works or not. We know that many people living with MND (plwMND) need a lot of help from their families (and care professionals) to deal with these problems, but we don’t know what support families need to help manage these problems. In this study, we want to understand what works best for managing these problems, so that we can help people make the right decisions for their care.
Project Aims
The research aims to understand:
- What secretion management interventions work, for whom, and in what circumstances?
- What are the barriers/facilitators to the implementation of secretion management interventions in Motor Neurone Disease, for plwMND, their carers and care professionals?
- What is the impact of secretions, and/or their management interventions on quality of life and support needs for plwMND and their carers?
Anticipated or actual outputs
- The study findings will be disseminated in relevant academic outlets, practitioner forums and communicated appropriately to patient/carer groups.
- We will aim to publish both the protocol, and the output of the complex intervention review and qualitative work. Abstracts will be submitted to the International Symposium on ALS/MND, both as “work in progress” and completed study.
- Outputs of the work will be presented to the MNDA professionals’ communities of practice and network days as required. The CI will work with the MNDA to determine other routes of dissemination and impact; such as updates to MNDA information sheets (e.g. ‘Managing saliva problems in motor neurone disease’), informing the ‘Optimal Clinical Pathway in MND work’ and contributing to NICE guidance/quality standard development as appropriate.
- A lay summary will be produced to share in patient/carer forums such as support groups or newsletters, and the MND Community Research Advisory Network.
Who is involved?
- PI- Dr Caroline Barry
- Co-applicants: Prof Morag Farquhar, Prof Jane Cross
- Collaborators: Helen Copsey, Emma Larner, Jen Bedford
