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.
In order to overcome these challenges, we must not underestimate the possible resistance to a paradigm shift. Our efforts should mainly target the learning that takes place in the clinical phases of medical training and should be accompanied by the creation of awareness in healthcare practice.
Discourse analysis from an ethics of care perspective. Good care for adults and young adolescents with cancer
Discourse analysis from an ethics of care perspective. Good care for adults and young adolescents with cancer
In search of defining good care for adults and young adolescents (AYA) with cancer, four students of the Master Ethics of Care and Policy of the University for Humanistic Studies in Utrecht performed a qualitative empirical discourse analysis from a care ethical perspective on the diary of Jip, an AYA with bone cancer. This article describes their process of reading, coding and clustering of the diary, and the use of their personal sensitizing concepts. They discovered four main discourses and themes that led to a demarcation of ‘goods’ for Jip. In Jips case, good care adapts to these unique goods.
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