TVLife
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:
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
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