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The lived experience of relapsing multiple sclerosis: a phenomenological study
1Buffalo General Hospital, Department of Neurology, New York 14203, USA.
Summary
This study explored the lived experiences of individuals with relapsing multiple sclerosis (MS). Key themes included uncertainty, fear, loss, and the importance of social support and hope for managing MS symptoms.
Area of Science:
- Neurology
- Autoimmune Diseases
- Phenomenology
Background:
- Multiple sclerosis (MS) is a central nervous system demyelinating disease.
- MS symptoms arise from autoimmune attacks on myelin, disrupting nerve impulses.
- Relapsing MS, affecting over half of cases, is often poorly understood compared to progressive forms.
Purpose of the Study:
- To describe the lived experience of individuals with relapsing multiple sclerosis (MS).
- To provide insight into the challenges and coping mechanisms of relapsing MS patients.
Main Methods:
- Hermeneutic phenomenology approach.
- Interviews with 10 patients diagnosed with relapsing MS over seven months.
- Data analysis using the Colaizzi method to identify emergent themes.
Main Results:
- Twelve dimensions describing the lived experience of relapsing MS were identified.
- Social networks influenced adjustment; hope and control aided coping.
- Uncertainty, fear, and loss were significant themes; diagnosis brought relief from fears of fatal illness or psychological instability.
Conclusions:
- Understanding the lived experience of relapsing MS is crucial for healthcare providers.
- Nurses should foster hope and open communication, recognizing the impact of social factors and uncertainty.
- Patients often concealed their condition due to societal misunderstanding.