"Taming the beast": Exploring the lived experience of relapsing remitting multiple sclerosis using a life history approach
Date of Award
Doctor of Philosophy (College of Nursing)
Associate Professor Joanna Patching
Professor Steve Vucic
Multiple Sclerosis (MS) is a complex neurological disease affecting the central nervous system and is driven by a complex autoimmune cascade. The peak age of onset is between the ages of 20 and 40 years and shows a female preponderance of 3:1. The most common form of the disease affecting 85% of people living with the illness is called relapsing remitting MS (RRMS), and is characterised by unpredictable relapses or exacerbations which usually last a few weeks before returning to baseline function. There is the possibility of disease progression and non-reversible disability after many years. RRMS is also characterised by a complicated array of symptoms which may affect sensory function, motor function, vision, gait, cognition, mood, bladder, bowel and sexual function. There is currently no curative treatment for RRMS, although recently there have been major advances in more efficacious treatments called disease modifying therapies (DMTs) to control relapses and possibly future disability.
The aim of this study was to gain insights and understanding into the lived experience of RRMS in order to inform patient-centred nursing care. Although there is an abundance of literature dealing with various aspects of the MS experience, there is a paucity of literature specifically exploring the general life experience of living with the disease and considering a broader understanding. Life history methodology, a form of focused ethnography, was used to explore the illness experience across the lifespan of 13 study participants living with RRMS. Semi-structured interviews were used to gather data and later transcribed by the researcher, before undergoing data analysis. Braun and Clarke’s (2006) method of thematic data analysis ensured a systematic and robust exploration of the lived experience and revealed eight key themes, 30 subthemes and 44 sub-subthemes, providing clarity and insight into the experience of living with RRMS.
Several novel findings were revealed by the thematic analysis including an appreciation of the importance of early life events prior to the onset of RRMS and their potential impact on later coping, adjustment and resilience after diagnosis. A key study finding was of people living with RRMS experiencing “Surplus Suffering”, a form of suffering over and above that caused by the disease itself and inflicted most often by health care professionals and significant others. Other themes explored concepts of “Piecing together the Puzzle” of RRMS at the beginning of the journey, “(Re)defining self” in the wake of an RRMS diagnosis, “Battling the Demons” that RRMS uncovers, dealing with invisible symptoms of the disease, managing the DMTs necessary to control the disease and their side effects, and ultimately “Taming the Beast” that is RRMS and “Holding Hands with Hope”.
The life history approach revealed these themes to be reflective of the ebbs and flows of life, intertwining with each other and changing positions of importance according to life events, whether directly related to RRMS or indirectly related. Numerous recommendations for clinical practice in MS care have been developed from the study findings which are anticipated to improve clinical care and to enhance the quality of life for people living with RRMS, along the life trajectory.
2019_Burke_Taming_Chapter1.pdf (243 kB)
2019_Burke_Taming_Chapter2.pdf (342 kB)
2019_Burke_Taming_Chapter3.pdf (306 kB)
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2019_Burke_Taming_Chapter8.pdf (287 kB)
2019_Burke_Taming_Chapter9.pdf (306 kB)
2019_Burke_Taming_References.pdf (487 kB)
2019_Burke_Taming_Appendices.pdf (4975 kB)
Burke, T. (2019). "Taming the beast": Exploring the lived experience of relapsing remitting multiple sclerosis using a life history approach (Doctor of Philosophy (College of Nursing)). University of Notre Dame Australia. https://researchonline.nd.edu.au/theses/207