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"Taming the Beast": Exploring the Lived Experience of Relapsing Remitting Multiple Sclerosis Using a Life History
Therese Burke1, Steve Vucic2, Joanna Patching1
1School of Nursing, The University of Notre Dame, Sydney, Australia.
Research and Theory for Nursing Practice
|October 17, 2019
Summary
Living with relapsing remitting multiple sclerosis (RRMS) involves a journey of symptom discovery, self-redefinition, and emotional challenges. Patients find hope and positivity by Taming the Beast and learning the DMT Dance.
Area of Science:
- Neurology
- Qualitative Research
- Patient Experience
Background:
- Relapsing remitting multiple sclerosis (RRMS) is a chronic neurological disease.
- Understanding the lived experience of RRMS is crucial for improving patient care.
Purpose of the Study:
- To gain insights into the lived experience of individuals with RRMS.
- To inform patient-centered nursing and healthcare practices for RRMS patients.
Main Methods:
- Qualitative study utilizing life history methodology.
- Focused ethnography approach with 13 participants diagnosed with RRMS.
- Semi-structured interviews analyzed through thematic analysis.
Main Results:
- Eight key themes emerged, detailing the RRMS journey.
- Themes include symptom "Puzzle" discovery, self-"(Re)definition," "Demons," "Surplus Suffering," "Invisibility," "Taming the Beast," "DMT Dance," and "Holding Hands with Hope."
- The findings reflect the dynamic nature of living with RRMS, encompassing emotional and practical challenges.
Conclusions:
- The identified themes offer a comprehensive understanding of the RRMS lived experience.
- Insights can enhance clinical nursing care and improve the quality of life for individuals with RRMS.
- This research emphasizes the importance of patient-centered approaches in managing chronic neurological conditions.
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