Terrains of Uncertainty. Communicative Challenges of Medically Unexplained Illness in Youth

Abstract

Persistent bodily symptoms without medical clarity creates many layers of uncertainty both for health professionals and for patients. In primary care, research has shown that clinical encounters of medically unexplained symptoms (MUS) are highly contentious, sometimes causing adverse effects. However, little is known about communicative challenges for adolescents in specialist health care settings; i.e. how they give meaning to their experiences, and how they handle social, moral and existential concerns. The overall aims of the present study were to explore these specific challenges of young MUS sufferers, and direct attention to how health care practices might support the youth's developmental processes. More precisely, in three different sites where uncertainty arose and had to be handled, I investigated how adolescents and health professionals positioned themselves within discourses and social structures to construct meaning by creating narratives and explanatory models. A multi-sited ethnographic approach and a triangulation of participatory qualitative methods was applied, including participant observation, life mode interviewing, focus groups and collaborative visual methods. Paper 1 demonstrates how a young boy made sense of his experiences of illness and disruptions of social life and future aspiration through a combination of personal and cultural themes. Paper 2 presents a conceptual model of methodological and epistemological paradoxes in specialist health care settings. Paper 3 shows how communicative challenges in a rehabilitation center are interactionally handled by adolescent patients and health professionals, leading to the construction of two categories of patients. By looking at how meaning is ascribed, how categories intersect, and experience is accounted for in the various contexts of this study, I offer a nuanced and contextualized understanding of the possibilities, challenges and limits among the subjects involved. With this study, I hope to contribute to a more reflexive and patient-centered practice by bringing attention to the different value systems and knowledge regimes that underpins clinical reasoning.