MOTOR NEURONE DISEASE - CONTRIBUTIONS THIS PROJECT BRINGS TO KNOWLEDGE

Updated: Jun 28

• This research provides a nuanced account of interpreting two philosophical positions on existential phenomenology (Heidegger, 1927/1962) and philosophical hermeneutics (Gadamer, 1975), and applying these as a methodology.


• It provides a descriptive personal reflection of supporting my mother through three phases of the illness trajectory, including my observations of MND care: ‘walking the walk’ of diagnostic reasoning (investigation and diagnosis); life as before, but not as before (continuity and decision-making); observing existential suffering (end of life). The hidden thread linking these experiences together is my loss.


• In returning to previously published reflections to explore the meaning of supporting a loved one with MND as they die, the research identifies four themes relating to the end of life trajectory of MND: loss of person (lived body experienced in silence); loss of relationships (lived relations are challenged); loss of home and loss of time (lived space and lived time take on new meaning); loss of future (dying – facing it alone).


• The method of data collection and analysis enabled a sensitive methodology for researching the phenomenon of existence with MND through time. The findings uncovered the concept of ‘existential loss’, of past ways of being-in-the-world, embodiment, spatiality, and the once projected future.


• In returning to the individual philosophical framework analysis to explore the meaning of uncertainty for people diagnosed with MND, the findings uncovered three phases of the MND illness trajectory: ‘body failing prematurely and searching for answers’; ‘body deterioration and responses to care’; and ‘body nearing its end and needing to talk.’


• The findings of the research are collated and integrated to develop a person-centred model of care which emphasises the need to acknowledge the temporal aspects of caring for a person with MND and their family/significant others.


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