A ten-year research project 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. (2023) The need to consider ‘temporality’ in person-centred care of people with motor neurone disease. Journal of Evaluation in Clinical Practice 29. In Press.
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.
This body of work has been cited in 77 published papers:
Denise A Harris - Google Scholar