Patient perspectives on managing uncertainty living with multiple sclerosis

ABSTRACT

Introduction: Canada is home to one of the highest global prevalence rates of multiple sclerosis; a disease with causes and treatments that continue to challenge physicians and patients alike. The aim of the present research was to explore patient experiences with the uncertainty that MS introduces to their lives and the role of communication with their physicians for managing uncertainty.

Methods: Interviews were conducted with 16 individuals aged 26–75, 5 male and 11 female, living with all three subtypes of multiple sclerosis (February–May 2016). Interview questions related to participant’s experiences at the point of diagnosis and ongoing management, and how and where they find information regarding MS. Data were analyzed using Mishel’s reconceptualized theory of uncertainty in illness to allow us to identify and explain how patients construct mental schema to cope with illness and uncertainty, the significance of uncertainty in their experiences, and how they move through uncertainty to adapt to their prior level of functioning.

Results: Data identify heightened uncertainty, and denial, in the initial stages of diagnosis, whereby communication with physicians did little to alleviate feelings of uncertainty. Over time, many participants came to view their physicians as navigators, helping them to manage their own online research and gathering of information beyond traditional health providers (e.g. individuals living with MS).

Conclusions: Through the experience of our participants, the present research brings to light the challenges patients face in managing uncertainty and means by which healthcare providers might assist patients in navigating their MS diagnosis.

KEYWORDS:

• Multiple sclerosis
• uncertainty
• communication
• illness experience
• illness management

Acknowledgements

Many thanks to the South Western Ontario chapter of the MS Society for their help in recruiting participants for this study; and to Dr. Katie Plaisance in the Department of Knowledge Integration at the University of Waterloo for her help in designing this study and guidance throughout the research process.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes on contributors

Dr. Alex R. Pearce is currently a family medicine resident at McMaster University in Collingwood, Ontario. She graduated in the class of 2019 at the Michael G. DeGroote School of Medicine at McMaster University. She has a Bachelor of Knowledge Integration with a minor in Social Development Studies and a specialization in Collaborative Design from the University of Waterloo. She focused her undergraduate studies largely within Social Development Studies at Renison and Health Studies through the School of Public Health and Health Studies at UW. She has previously co-authored works on the topics of institutional trust, trust in healthcare, food regulation and policy, flu vaccines, and communication between patients and family physicians.

Dr. Samantha B. Meyer, Assistant Professor, completed her undergraduate honours degree at McMaster University (Anthropology) before moving abroad to Adelaide, Australia to complete her graduate work in Public Health. Upon completion of her PhD in 2011, Meyer held a faculty appointment within the Discipline of Public Health at Flinders University. Meyer remains active in her research in Australia, holding an adjunct position at Flinders University. At present, Meyer is an Assistant Professor in Public Health and Health Systems at the University of Waterloo, Canada. Meyer’s research interests include access to and uptake of preventative services in Canada; access to and social determinants of bariatric surgery; equity in access to healthcare services; food regulation and policy; and trust in food. Her current major research focus is the critical issue of trust in healthcare and its implications for preventative service utilization.