Fear, fight, familiarize: the experiences of people living with relapsing-remitting multiple sclerosis and taking oral medication

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.

KEYWORDS:

• Multiple sclerosis
• disease modifying treatment
• oral medication
• qualitative
• phenomenology

Acknowledgments

The authors would like to thank the 25 participants of this study for finding the time to talk to us and sharing their story. The authors would also like to thank the neurologists (Stephan Frequin, Erwin Hoogervorst and Bob van Oosten) and MS nurses (Kim Bakker, Marianne Eskes and Truus Langenberg) who assisted us in the recruitment of patients by informing them about this study and asking them to participate.

Disclosure statement

The authors declare that there is no conflict of interest. The funding sponsor was not involved in the collection, analysis, and interpretation of the data, nor in the writing of the report. The authors did ask the funding sponsor for permission to submit the report for publication, prior to submitting it to this journal.

Notes

1. Aubagio = Teriflunomide.

2. Tecfidera = Dimethyl fumarate.

Additional information

Funding

This work was supported by Sanofi Genzyme under Grant GZ-2015-11431.

Notes on contributors

Eva Van Reenen

Eva van Reenen has a Bachelor’s degree in Medicine and a Master’s degree in Care Ethics and Policy. After finishing her Master’s thesis on Care Ethics and Medical Education, she worked as a junior research for the University of Humanistic Studies on the project that is reported on in this article. She is currently starting with a PhD-project on developing a tool for people with RRMS, to better support them in the decisions they face on treatment.

Wieke Van Der Borg

Wieke van der Borg is a researcher in Social Sciences at the Department of Medical Humanities at the Amsterdam UMC, the Netherlands. She has a background in Psychology and seven years of research experience within the domain of health care. Her current research focuses on quality of life and quality of care as experienced by patients with chronic conditions.

Merel Visse

Merel Visse is an Associate Professor of Care Ethics at the University of Humanistic Studies in The Netherlands. Merel is both a scholar and artist whose work combines writings and artistic practice to inquire the moral good in care. For an overview of her publications, special appointments and projects, please visit http://www.merelvisse.com.

Hanneke Van Der Meide

Hanneke van der Meide is a postdoctoral researcher at Tilburg University. Her research focuses on patient perspectives. She has wide experience in qualitative empirical research and has great knowledge of phenomenological research approaches. She had conducted and supervised various studies on the meaning of MS in daily life.

Leo Visser

Leo Visser is a neurologist at the Elisabeth-TweeSteden Hospital in Tilburg and professor by special appointment in Ethics of Care and people with Multiple Sclerosis at the University of Humanistic Studies. He has abundant expertise in neurological research and is particularly interested in the patients’ perspective on the impact of MS in daily life. With dr. Arnoldus, neurologist, he is leading the MS Centre Midden-Brabant (The Netherlands). Prof. dr. Visser has a large network of neurologists active in MS clinics in the Netherlands. He has recently been the chairman of the Dutch guidelines for MS and the Dutch workgroup for MS.