TVLife

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

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:

• 6 patient-focused case studies, each involving 2-4 people

• Interviews with patients - 10 participants

• Interviews with family members - approximately 10 participants

• Interviews with healthcare professionals - approximately 20 participants

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

• Patients with MND

• Family members

• Healthcare professionals

Location

• University of Nottingham

Information about study sites

Contact details

Nicola Turner, email: nicola.turner@nottingham.ac.uk

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:

• Over 18 years old

• Be diagnosed with MND and using ventilation via tracheostomy/ laryngectomy 

• Willing to share their experience of using tracheostomy ventilation

• Able and willing to use an online video conferencing tool,email or phone

• Able to give informed consent

Inclusion criteria for family members/friends:

• Over 18

• In a close relationship with someone dependent on home ventilation via tracheostomy/laryngectomy for MND

• Willing to share their experiences of the care of someone with MND using tracheostomy ventilation

• Able and willing to use an online video conferencing tool,email or phone

• Able to give informed consent

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

• Over 18

• Previously in a close relationship with someone dependent on home ventilation via tracheostomy/laryngectomy for MND

• Bereaved >8 weeks and <3 years prior to participating in the study

• Willing to share their experiences of the care of someone with MND using tracheostomy ventilation

• Able and willing to use an online video conferencing tool,email or phone

• Able to give informed consent

Inclusion criteria for health and care professionals (HCPs):

• Be involved in some aspect of the care of people with MND who have or may consider tracheostomy ventilation

• Able and willing to use an online video conferencing tool,email or phone

• Able to give informed consent 

Key exclusion criteria:

Exclusion criteria for patients:

• Less than 18 years old

• Not diagnosed with MND

• Not using tracheostomy ventilation

• Not willing to discuss their experiences

• Lack or loss of capacity

• Unable to give informed consent

• Unable to participate remotely where needed

Exclusion criteria for current family members/friends:

• Less than 18 years old

• Not in a close relationship with someone diagnosed with MND who is using tracheostomy ventilation

• Not willing to discuss their experience

• Unable to give informed consent

• Unable to participate remotely where needed

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

• Less than 18 years old

• Not previously in a close relationship with someone diagnosed with MND who used tracheostomy ventilation

• Bereaved <8 weeks or >3 years prior to participating in the study

• Not willing to discuss their experience

• Unable to give informed consent

• Unable to participate remotely where needed

Exclusion criteria for health and care professionals (HCPs):

• Less than 18 years old

• No experience of working with people with MND

• Not willing to discuss their experience

• Unable to give informed consent

• Unable to participate remotely where needed 

Funder

MND Association

Sponsor

University of Nottingham

Study design

Observational