Updated: Feb 22
This series of blogs bring to knowledge paper 2 a descriptive personal reflection, written as part of the research process and drawing on the philosophy of hermeneutic (interpretive) phenomenology.
Harris, D.A. (2017a) Supporting a loved one living with motor neurone disease. Palliative and Supportive Care 15, 141–142. https://doi.org/10.1017/S1478951516000134
Starting out as a postgraduate student, I had both personal and professional experiences of motor neurone disease (MND). These experiences encompassed supporting my mother living through the trajectory of PBP MND, including when she was unable to move or communicate her needs, priorities and preferences at the end of her life, and my experience as an occupational therapist caring for other people with ALS MND. Thus, I had experience of person-centred care from the perspectives of both the receiver and the provider. These experiences created a number of challenges for me, and created a tension between my need to develop as a researcher and a background of personal loss. My situation is not unique; others have used their own experiences of MND to develop as researchers, and to interpret the experiences of other people living with, or affected by, MND (Clabburn, 2018; Sakellariou, 2013).
Gadamer (1975) notes that every act of understanding involves reflection on one’s preunderstandings. Preunderstandings become obvious through confronting different prejudices or beliefs (Fleming et al., 2003). The process of reflection began for me with reviving memories of my mother’s illness and then writing a timeline of the events and experiences that challenged my preunderstanding of person-centred care. Many of the events and experiences had occurred within the care context but would not be in any written report. The timeline that I created revealed and examined my preunderstanding of the events and experiences of MND.
Paper 2 acknowledges that my mother was so much more than a patient with MND: she was the matriarch of our family, whose MND affected her body but not her mind. She was a courageous woman, who was determined to remain in control of her life and her death, despite adversity. Thus, I acknowledge her strength and capability, although she was locked within her body, while also affirming the inherent values of being a daughter and a healthcare professional in the MND care context.
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