Living with Motor Neurone Disease (MND) and Dysphagia -the personal experiences of individuals with MND and their caregivers

Motor Neurone Disease (MND) is one of the most progressive diseases of the nervous system, for which there is no cure. It often leads to weakness in the arms, hands and legs, posing difficulties with daily life activities. Throat muscles can also be affected leading to speech and swallowing problems (dysphagia). Dysphagia can be life threatening and cause chest infection, pneumonia, malnutrition, and dehydration. Effects of Dysphagia can have a severe impact on people's lives from a medical and a psychological perspective. Some consequences of swallowing problems (like embarrassment, anxiety and a fear of choking) affect not only the patients but also their families. Approximately 200-240 patients in Ireland have MND, with 80 patients being diagnosed annually. Dysphagia affects about 70% of people with MND. Little is known how dysphagia affects the lives of people with MND, also the needs of the care assistants of these patients are also poorly known. Without this knowledge it is difficult to predict and provide adequate health and social care.
This qualitative study aims to improve our understanding of living with MND and dysphagia from patients' and their caregivers' perspective. It will examine if and how dysphagia affected their lives, clarify what dysphagia means for them, and investigate the main difficulties experienced and possible ways of coping with them.
This study plans to conduct multiple interviews (average 60) will be conducted with 10 adults with MND and 10 caregivers. The Interpretative Phenomenological Analysis approach will be used to analyse the data following a step by step guide (Smith et al. 2009). The results will deepen our understanding of MND, provide implications for health care professionals involved in MND care and make suggestions for future research. Understanding the problem is imperative to manage it well.

Award Date: 14 May 2016
Award Value: €162506
Principal Investigator: Ms Dominika Lisiecka
Host Institution: University College Cork
Scheme: Research Training Fellowships for Healthcare Professionals