How people with motor neurone disease talk about living with their illness: a narrative study

This paper is a report of a study which explores patients' experiences and how they talk about living and coping with motor neurone disease.

Living with motor neurone disease is challenging, frightening and disabling. It leads to progressive physical decline, normally with a prognosis of 3-5 years. Patients have to deal with many problems, including loss of mobility and the inability to communicate. There is little evidence about how people manage these problems or live with this illness.

Narrative case studies were used, the unit of analysis being a patient living in their own home or a care home. Thirteen adults were recruited through purposeful sampling. Longitudinal narrative interviews were conducted at three-monthly intervals over an 18-month period in 2005-06. Interviews were analysed focusing on the form and content of the patients' narratives.

Four types of narrative, or storyline were identified. The sustaining storyline is about living life as well as possible through keeping active and engaged in life. In contrast, the enduring storyline concerns living in an insurmountable situation leaving the person feeling disempowered, unable to fight for life or against death. Survival is the essence of the preserving storyline, while the fracturing storyline concerns loss and fear of what is to come.

Storylines help make sense of complex narratives by encouraging closer attention and active listening to the stories and serve as organizing threads to help patients, families and healthcare professionals better understand living with motor neurone disease.