Spheres of uncertainty: A phenomenological inquiry into healthcare practice surrounding the care for people with relapsing-remitting multiple sclerosis.

Background: Uncertainty is pervasive in healthcare and permeates every clinical encounter between patients and medical professionals. Patients with specifically uncertain diagnoses or treatments such as multiple sclerosis (MS) are more likely to respond negatively to a lack of clear information. Research into MS has a narrow focus on scientific issues of uncertainty, such as causal explanations or treatment recommendations. Inquiry into the interplay between various dimensions, contexts, and subjects of uncertainty in a relational practice and institutional context, is scarce. The objective of this research is to investigate the phenomenon of uncertainty as it appears in hospital practice surrounding outpatient care for people with relapsing-remitting multiple sclerosis (RRMS). Methods: This study followed a phenomenological research design, inspired by the work of Les Todres on embodied enquiry. Fifteen people with a recent (less than one year) diagnosis of RRMS were included and prospectively shadowed during hospital appointments over the course of two years. Results: The phenomenon of uncertainty is captured as occurring in four different spheres: 1) precarious spaces, 2) elusive technology, 3) hidden expectations, and 4) unsure communication. The image of spheres points to their varied and sometimes opposing (sur)faces when rotated around their axis. The spheres can increase or decrease a sense of doubt, confusion, restlessness, or anxiety in both patients and healthcare providers. Conclusion: The four different spheres never seem to fully surface, making uncertainty a masked phenomenon. The findings imply a need for an "unveiling" of uncertainty through 1) examining and debating the course of action at the outpatient clinic, 2) reconsidering the promises and perils of technology, and 3) through metacommunication with patients.