Motorneurone Disease Nervous System Diseases
Conditions
Interventions
The research allows for a longitudinal design of data collection to occur over 12 months at three different time points per patient case, approximately 4 to 6 months apart. The research design, based
Sponsors
University of Birmingham
Eligibility
Sex/Gender
All
Age
18 Years to 100 Years
Inclusion criteria
Inclusion criteria: Patients and carers: 1. Adults (over 18 years) 2. Able to make decision of informed consent to take part in the study 3. Able to participate in an interview (written or spoken) 4. Receiving or received specialist service from the Hospital Based Centre or hospice Primary care healthcare professional interviews: 1. Working in a participating site supporting delivery of Motor Neurone Disease services.
Exclusion criteria
Exclusion criteria: 1. Unable to consent 2. Medically too unwell to participate or otherwise deemed unsuitable for participation by clinical team 3. Expressed a wish not to be contacted or involved in research 4. Children and young people under the age of 18 years old
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1. Patient communication experiences with healthcare providers are measured using semi-structured interviews at different points in their disease trajectory 2. Healthcare providers experiences of communicating with people living with MND and ways to over come the challenges in clinical interactions measured using semi-structured interview | — |
Secondary
| Measure | Time frame |
|---|---|
| There are no secondary outcome measures | — |
Countries
England, United Kingdom
Contacts
Public ContactCara Bailey
Outcome results
None listed