TVLife v1
Research type
Research Study
Full title
Understanding living with tracheostomy ventilation for Motor Neurone Disease (MND) and the implications for quality of life
IRAS ID
318973
Contact name
Eleanor Wilson
Contact email
Sponsor organisation
University of Nottingham
Duration of Study in the UK
1 years, 5 months, 31 days
Research summary
This study will explore patient, family and health and care professional experiences of using tracheostomy ventilation (TV) to support breathing for people with Motor Neurone Disease (MND). 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 national guidance which supports the care of patients with MND in the UK.
To better understand what it is like to live with TV, we want to speak to people with MND who have TV, family members, and health professionals involved in their care. We will use interviews to allow participants to ‘talk’ to us in whatever way they prefer, such as by telephone or video call, or in emails or other forms of text messaging. We will also ask a small number of patients and families to take part in some in-depth case studies. These will focus on experiences of everyday living. We will ask participants to ‘show’ us their environments and the items involved in their daily routines by taking photographs, and by plotting relationship maps of the key people involved in their care. By speaking to those who have experience of living with TV we will be able to better understand what is involved and the impact on patients and families. Anticipated outcomes include updated information for patients and families, and contributions to national guidance, future commissioning, and staff training. For those suitable for TV, better understanding may lead to greater choice about their future treatment and care.
REC name
East Midlands - Leicester South Research Ethics Committee
REC reference
22/EM/0256
Date of REC Opinion
3 Dec 2022
REC opinion
Favourable Opinion