NCARE (Nottingham Centre for the Advancement of Research into Supportive, Palliative and End-of-life Care)

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

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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 Methods23https://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.

 

 

 

 

NCARE (Nottingham Centre for the Advancement of Research into Supportive, Palliative and End-of-life Care)

University of Nottingham
School of Health Sciences
Queen's Medical Centre
Nottingham, NG7 2HA


email: kristian.pollock@nottingham.ac.uk