Professor Nick Watson
Dr Jo Ferrie
Strathclyde Centre for Disability Research
University of Glasgow
Most previous research on motor neurone disease (MND) has tended to focus on the medical aspects associated with the condition, how the disease progresses and how the disease can best be managed. We currently know little about how motor neurone disease is experienced from the perspective of those with the condition or their family and carers. We do not know their feelings on the process of diagnosis or the impact that diagnosis has on them and on their relationships with their immediate family, their friends and their acquaintances. We also know little about how the family itself reacts to and responds to the presence of a family member with MND. Neither do know how they experience the care they receive in the hospital, in the community and how they manage their pathway through care as they transfer from one service to another and how their views change over time.
This study will adopt a research methodology that will allow the voices of those with MND and their family and carers to be heard. We will employ methods to capture the range and depth of experiences. We will carry out focus groups, in-depth interviews and participant observation with a range of informants including those with MND themselves, their immediate family and carers and those charged with providing professional care.
We will seek to collect our data from as broad a range of people as possible and, with the help of the MND Scotland, seek to recruit people diagnosed with MND from across Scotland and will endeavour to gather the views of people from the range of social experiences and from geographical locations across Scotland.