Updated: Jun 28
The genesis of this research lies in experiences of caring professionally for people living and dying with motor neurone disease (MND) and in personal experiences of caring for my mother with the same condition. These experiences led me to an understanding that MND threatens the sense of existence for both the person with the condition, and their family. MND is a devastating neurodegenerative terminal condition that results in loss of the motor neurones that enable a person to move, speak, and at the end of life, to breathe. At the outset of this project, previous research had focused on the narratives of people living with MND at a single point of time; thus knowledge of the meaning of existence with MND through time is limited.
This is a multiphase study that uses two distinct methodologies: hermeneutic (interpretive) phenomenology and autoethnography to explore the lived experiences of self and others. The three key areas of study are: (i) the phenomenon of existence when someone is given a diagnosis of MND and in the context of receiving healthcare; (ii) the meaning of living with uncertainty for people diagnosed with MND; and (iii) the meaning of supporting a loved one with MND as they die. The outcomes of this research have significantly contributed to knowledge through the publication of six peer-reviewed papers. The findings of the research are collated and integrated to develop a person-centred model of care that emphasises the need for MND professionals to acknowledge the temporal aspects of caring for a person with MND, and for their family carers.
It is acknowledged that MND care is complex, but that this complexity can be reduced if the range of professionals who provide MND care interpret the care needs of the people at end of life with MND to provide not only multi-professional, but inter-professional person-centred care.