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The Meaning of Living with Uncertainty for People with Motor Neurone Disease

Harris, D, Jack, K and Wibberley, Christopher (2018) The Meaning of Living with Uncertainty for People with Motor Neurone Disease. Journal of Clinical Nursing, 27 (9-10). pp. 2062-2071. ISSN 0962-1067

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Abstract

Aim. The aim of this study was to explore the meaning of living with uncertainty for people diagnosed with motor neurone disease (MND). Background. MND 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 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.

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