A ten-year research project that has focused on:
Interpreting the Meaning of Existence for the Person with Motor Neurone Disease, and their Family Carer(s)
This is a multi-phase 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 seven peer-reviewed papers:
Harris, D. (2021) Interpreting end-of-life experiences of the person with motor neurone disease. Palliative and Supportive Care, 1–2.
Harris, D.A. Jack, K. and Wibberley, C. (2020) The need to consider ‘temporality’ in person-centred care of people with motor neurone disease (In press). Accepted Manuscript, 4th June 2020, European Journal for Person-Centered Healthcare.
Harris, D.A. Jack, K. and Wibberley, C. (2019) Making her end of life her own: further reflections on supporting a loved one with motor neurone disease. International Journal of Palliative Care Nursing, Vol 25, No.6, 284-292
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.
Harris, D.A. (2017) Doing research drawing on the philosophy of existential hermeneutic phenomenology. Palliative and Supportive Care 15, 267–269.
Harris, D.A. (2017a) Supporting a loved one living with motor neurone disease. Palliative and Supportive Care 15, 141–142.
Harris, D.A. (2015) Lived-through past, experienced present, anticipated future: Understanding “existential loss” in the context of life-limiting illness. Palliative and Supportive Care 13, 1579–1594
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.
Video presented at the 32nd International Symposium on ALS/MND, see more...