Understanding living with Tracheostomy Ventilation for Motor Neurone Disease (MND) and the implications for Quality of Life ("TVLife")

This study is actively recruiting MND patients that are using tracheostomy ventilation, and also people that have experience of supporting a family member or friend to use trachy ventilation for the respiratory symptoms of MND.

Read the recruitment flyer (PDF, 202KB) to find out more, and also the Participant Information Sheets:

Participant Information Sheet for MND patients (PDF, 234KB)

Participant Information Sheet for family members (PDF, 233KB)

UK Chief Investigator

Dr Eleanor Wilson

Research summary

This is a UK-wide qualitative study using remote data collection across two workstreams: 

1) Patient focused case studies including people with MND, family members and healthcare professionals to provide detailed focus on experiences and tasks of daily living from multiple perspectives. 

2) Interviews with patients, family members both currently living with MND and bereaved in the past 3 years and health professionals to provide a selection of views on broader experiences and issues relating to the use of tracheostomy ventilation for people with MND, such as the decision-making process and patient choice. Qualitative methods of data collection and analysis are particularly suitable when little is known about the issue and in the study of complex topics as they can help explore different types of views and experiences. 

Current status

Open to recruitment

Recruitment target

58 participants, broken down as:

Click here to see how many partcipants have been recruited into this study to date (external link to the NIHR public study search) 

Recruitment groups


Information about study sites

Contact details

Nicola Turner, email:

Key dates

Recruitment opening date: 01 February 2023

Planned recruitment end date: 29 February 2024

Inclusion / exclusion criteria

Key inclusion criteria:

Inclusion criteria for patients:

Inclusion criteria for family members/friends:

Inclusion criteria for bereaved family members/friends (Workstream 2):

Inclusion criteria for health and care professionals (HCPs):

Key exclusion criteria:

Exclusion criteria for patients:

Exclusion criteria for current family members/friends:

Exclusion criteria for bereaved family members/friends (Workstream 2):

Exclusion criteria for health and care professionals (HCPs):


MND Association


University of Nottingham

Study design