Patient perspectives on managing uncertainty living with multiple sclerosis

Abstract

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.