The meaning of living with uncertainty for people with motor neurone disease

Aims and objectives To explore the meaning of living with uncertainty for people diagnosed with motor neurone disease (MND). Background Motor neurone disease is a progressive neurodegenerative condition resulting in multiple needs, arising from the complex nature of the disease trajectory. People with MND are often required to make decisions for symptom management and end‐of‐life care. Research into the lived experience of MND has previously highlighted the following: the shock of receiving such a diagnosis and prognosis; subsequent concerns relating to the future and loss; and the existential suffering for a person with MND. The lived experiences of MND accentuate the devastating nature of the disease, and this can impact upon how people respond to care. Design Hermeneutic (interpretive) phenomenology: suitable for studying lifeworld experiences. Method Life story interviews were conducted with four participants and subjected to interpretive analysis. Results Three phases of the MND illness trajectory emerged: “body failing prematurely and searching for answers,” “body deterioration and responses to care” and “body nearing its end and needing to talk.” These phases highlight the phenomenon under study, all relating to uncertainty for people living with MND. Conclusions This study showed that people with MND are living with uncertainty and other concerns throughout their illness trajectory. People are having to turn to palliative care professionals who are more able to meet their concerns than those caring for other aspects of their disease. Relevance to clinical practice Motor neurone disease is a complex disease, and it is important that professionals continue to provide holistic care throughout the illness trajectory. The identification of three distinct phases of the MND illness trajectory will help nurses and other professionals to better understand the meaning of uncertainty and other concerns for people with MND.