Exploring communication between people living with Motor Neurone Disease and their close persons with healthcare professionals: a longitudinal qualitative study
Motorneurone Disease
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 on a previous study, will capture the patients’ journey, highlighting good examples of communication and any deficits at different time points in the disease progression, in some cases from diagnosis to death. There are three phases in the research. Phase one, taking place during months 1 to 12, involves a systematic review of challenges and concerns that people living with MND (plwMND) may experience. The focus will be on unmet communication needs, barriers and facilitators during communication between patients, professionals, and carers, and communication strategies or interventions. The review may need to be broadened to include progressive illness or neurological impairments if evidence specific to MND is scarce. Phase two, occurring during months 6 to 18, is a longitudinal study to explore communication experiences of plwMND through interviews and observations. Longitudinal study designs are an established approach in qualitative research, as they provide insights into the patients’ journey from diagnosis to death, highlighting changing communication needs at different points in the disease. Each case dataset for the longitudinal study will comprise up to six components: three interviews with plwMND (for example, at months 1, 6, and 12), an interview with a close person at any time point, observation of a clinical consultation, and an interview with a healthcare professional following the observation. The setting includes specialist MND services provided by hospices and hospitals, as well as one non-specialist hospice located in the Midlands of England. There are 24 MND Care Centres and networks across England, Wales, and Northern Ireland, developed by the MND Association at hospital sites that run clinics and outpatient appointments for plwMND. The aim of the c
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.
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