Understanding living with tracheostomy ventilation (TV) for Motor Neurone Disease (MND) and the implications for quality of life
Project duration
23 months (July 2022 to June 2024)
Funder
Motor Neurone Disease Association (MNDA)
Project staff
Dr Eleanor Wilson – Chief Investigator
Dr Nicola Turner – Senior Research Fellow
Co-investigators
Professor Christina Faull – Consultant in Palliative Medicine and MND, LOROS Hospice, Leicester
Jonathan Palmer – Respiratory Nurse Consultant, University Hospitals Plymouth
Collaborators
Professor Martin Turner – Consultant Neurologist, John Radcliffe Hospital, Oxford
Dr Scott Davidson – Deputy Medical Director (Acute), NHS Greater Glasgow & Clyde
Study summary
What was the study about?
This study set out to explore patient, family and healthcare professional experiences of using tracheostomy ventilation (TV) to support breathing for people with Motor Neurone Disease (MND).
We have spoken with:
- 14 people living with MND who use TV
- 16 family members (including bereaved family members) who have experience of supporting a person with MND to use TV
- 24 healthcare professionals who have experience of supporting a person with MND to use TV
Tracheostomy ventilation is not often used by people with MND in the UK. Rates of TV are much higher In Japan, Italy, Spain, and the United States. The reasons for this are not clear and have not been explored. TV is not covered in the NICE guidance which supports the care of patients with MND in the UK.
We wanted to understand more about the experience of using TV and the implications for quality of life by speaking to people with MND who use TV themselves, as well as to family members and healthcare professionals involved in their care.
Publications
Wilson, E., & Turner, N. (2024). Expanding qualitative interviewing for studies involving adults with different communication needs: Reflections on research with people living with Motor Neurone Disease. International Journal of Qualitative Methods, 23. https://doi.org/10.1177/16094069241251537
Turner, N., Faull, C., Palmer, J., Armstrong, A., Bedford, J., Turner, M. R., & Wilson, E. (2024). Understanding Quality of Life for People with Motor Neurone Disease Who Use Tracheostomy Ventilation and Family Members: A Scoping Review. Brain Sciences, 14(8), 821. https://www.mdpi.com/2076-3425/14/8/821
Further information
If you would like to find out more about the study, please contact Elli Wilson.
Additional contacts
Nicola Turner.