Living with motor neurone disease: An interpretive study

Brott, Tamzin
Hocking, Clare
Paddy, Ann
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Master of Health Science
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Auckland University of Technology

While there have been many aspects of Motor Neurone Disease explored in previous studies, none have captured the experience from the perspective of people who live with it. This study has asked the question “What is the meaning of living with Motor Neurone Disease?” with the reply being the direct voice of people who have been diagnosed and live with Motor Neurone Disease day in, day out. The philosophy informing this study and the analysis is that of Heideggerian hermeneutic phenomenology. Its domain of inquiry is lived experience, the individual’s experiences within their life-world. This approach, along with van Manen’s four life world existentials, lived body, lived space, lived other, and lived time, reveals the impact of living with a body that is increasingly becoming unready-to-hand, and the impact this has on participation in occupations, and on being-in-the-world. Seven participants where interviewed to obtain rich narratives of the experience of living with Motor Neurone Disease. These narratives informed the findings of this study and uncovered the initial impact of living with an increasingly ‘wobbly body’. A body that is changing, the journey of understanding why, and learning to manage the wobbly body at home and in public is an initial finding. A further finding is that of the challenge to remaining a vital being. A further focus was on the need of roles and occupations in our lives to define who we are, and what happens when the roles that used to define us are no longer available, due to a changing body. The impact of strangers involved in care, the numbers who arrive, and the trust issues that are inherent in those relationships are another aspect of the findings. Healthcare professionals, and others involved in the care of people living with Motor Neurone Disease, become both trusted others and at times experts. It is important for this group of people to understand the impact of this relationship failing or when the trust is broken. All of the above areas highlighted are important for healthcare professionals, and others who live and work alongside people who experience life with Motor Neurone Disease, to be cognisant of and integrate them into education and practice. By attempting to understand what it is like to live with a body that is not ready-to-hand, the number of strangers and others who enter their lives and the trust issues alongside this, the relationship between healthcare professionals and those they work alongside will be enhanced.

Amyotrophic lateral sclerosis -- Patients -- New Zealand
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