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 shock of receiving such a diagnosis and prognosis, subsequent concerns relating to the future and loss, and the existential suffering of a person with MND. Lived experiences of MND accentuate the devastating nature of the disease, which can impact how people respond to care.

Design: Hermeneutic (interpretive) phenomenology is suitable for studying lifeworld experiences. Method: Four participants were interviewed about their life stories 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 live 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 different aspects of their disease.

Relevance to clinical practice: Motor neurone disease is complex, and professionals must continue to provide holistic care throughout the illness trajectory. Identifying three distinct phases of the MND illness trajectory will help nurses and other professionals better understand the meaning of uncertainty and other concerns for people with MND.

KEYWORDS body experiences, concerns, motor neurone disease, palliative care, uncertainty

Reference:

Harris, D.A., Jack, K. and Wibberley, C. (2018) The meaning of living with uncertainty for people with motor neurone disease. Journal of Clinical Nursing, 27, 2062-2071. https://doi.org/10.1111/jocn.14350

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