Abstract
ABSTRACT Purpose: In addition to becoming familiar with the life changing event of having a chronic illness and exploring its meaning in daily life, people with relapsing-remitting Multiple Sclerosis (RRMS) are faced with important decisions about immunomodulating treatment. Biomedical research on the use of Disease Modifying Therapies (DMTs) mostly focuses on adherence, conceptualized and understood as a behavioral act leading to a desired outcome. Less attention has been paid to the meaning for a person with RRMS of starting and continuing the use of DMTs. Studies on the experiences of people with RRMS taking orally administered DMTs are lacking. The aim of this phenomenological study was to examine the experiences of people with RRMS taking oral medication. Methods: The study was guided by Interpretative Phenomenological Analysis (IPA) and Phenomenology of Practice. 25 persons with RRMS participated in in-depth interviews. Results: In general, participants of this study find themselves in alternating phases that vary by degree of experienced unfamiliarity or familiarity with concern to one’s illness, one’s changing body, and one’s new life. The meaning of taking medication is closely related to these phases. Conclusions: Adherence serves a purpose in the lifeworlds of participants. Medication is the embodiment of this purpose. The pill has inherent meaning.
Highlights
Multiple sclerosis (MS) is a chronic, currently incurable disease of the central nervous system that is known for its unpredictable course
The study was guided by Interpretative Phenomenological Analysis (IPA) and Phenomenology of Practice. 25 persons with relapsing-remitting Multiple Sclerosis (RRMS) participated in in-depth interviews
We begin with a thematic account of the experience of living with RRMS and taking oral medication, followed by a deepening of the findings through the use of lifeworld existentials
Summary
Multiple sclerosis (MS) is a chronic, currently incurable disease of the central nervous system that is known for its unpredictable course. The symptoms of MS are vast and affect each person differently. People with MS can experience symptoms such as pain, fatigue, loss of sight, spasticity, sensory loss, cognitive impairment, and bladder or bowel dysfunction. There are approximately 2,3 million people suffering from MS worldwide (Browne et al, 2014). The average age of onset is 30 years (Browne et al, 2014). Four clinical MS phenotypes are identified: benign, primary progressive, secondary progressive, and relapsing-remitting (RRMS) (Compston & Coles, 2008)
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