Exploring the transitional process from receiving a diagnosis to living with motor neurone disease

Abstract

Motor neurone disease (MND) is a rapidly progressing neurodegenerative condition that results in a marked reduction in life expectancy. Currently, little is known about the experiences of people after they have received this diagnosis and the effect of this on their sense of self and identity. In this study, interpretative phenomenological analysis was used to explore both the personal and lived experiences of people with MND. Seven people diagnosed with MND within the previous six months were recruited. The three themes constructed from the participants’ accounts were ‘Then they dropped the bomb shell’; Receiving a diagnosis of MND; ‘Getting on with it’; Learning to live with MND; and ‘A lot of normal life is lost’; Experiencing progressive loss. Participants described receiving a diagnosis as a devastating experience but most participants were able to accept their diagnosis and employ adaptive strategies to cope with increasing levels of functional decline. However, in spite of this, the participants experienced functional changes that affected their identity, social status and social relationships.

Keywords:

• motor neurone disease
• diagnosis
• experience
• psychological
• qualitative

Acknowledgements

We gratefully acknowledge the input and inspiration of professor Douglas Mitchell, formerly Director of Research and consultant neurologist at the Royal Preston Hospital, Lancashire Teaching Hospitals NHS Foundation Trust, Preston, UK, who sadly passed away during the completion of this study. We are also grateful for the input of the following members of the MND clinical team: Pauline Callagher, Robert Addison-Jones and Wendy Bennett.

Notes

1. MND is the generic term used in Europe, whilst in the US amyotrophic lateral sclerosis and Lou Gehrig’s disease are more frequently used.