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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Dr
Eleanor
Wilson
eleanor.wilson@nottingham.ac.uk
nicola
turner
nicola.turner@nottingham.ac.uk
More information about this study, what is involved and how to take part can be found on the study website.
Systemic atrophies primarily affecting the central nervous system
This information is provided directly by researchers, and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.
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 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.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Observational type: Qualitative;
You can take part if:
You may not be able to take part if:
Patients • Less than 18 years old • Not diagnosed with MND • Not using TV • Not willing to discuss their experiences • Lack or loss of capacity • Unable to give informed consent • Unable to participate remotely where needed Current family members/friends • Less than 18 years old • Not in a close relationship with someone diagnosed with MND who is using TV • Not willing to discuss their experience • Unable to give informed consent • Unable to participate remotely where needed Bereaved family members/friends (Workstream 2) • Less than 18 years old • Not previously in a close relationship with someone diagnosed with MND who used TV • 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 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
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
Dr
Eleanor
Wilson
eleanor.wilson@nottingham.ac.uk
nicola
turner
nicola.turner@nottingham.ac.uk
More information about this study, what is involved and how to take part can be found on the study website.
The study is sponsored by University of Nottingham and funded by MOTOR NEURONE DISEASE ASSOCIATION .
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Read full details
for Trial ID: CPMS 55097
You can print or share the study information with your GP/healthcare provider or contact the research team directly.
