“Fluctuation is the norm”: Rehabilitation practitioner perspectives on ambiguity and uncertainty in their work with persons in disordered states of consciousness after traumatic brain injury

by Christina Papadimitriou, Jennifer A. Weaver, Ann Guernon, Elyse Walsh, Trudy Mallinson, Theresa L. Bender Pape

The purpose of this study is to describe the clinical lifeworld of rehabilitation practitioners who work with patients in disordered states of consciousness (DoC) after severe traumatic brain injury (TBI). We interviewed 21 practitioners using narrative interviewing methods from two specialty health systems that admit patients in DoC to inpatient rehabilitation. The overarching theme arising from the interview data is “Experiencing ambiguity and uncertainty in clinical reasoning about consciousness” when treating persons in DoC. We describe practitioners’ practices of looking for consistency, making sense of ambiguous and hard to explain patient responses, and using trial and error or “tinkering” to care for patients. Due to scientific uncertainty about diagnosis and prognosis in DoC and ambiguity about interpretation of patient responses, working in the field of DoC disrupts the canonical meaning-making processes that practitioners have been trained in. Studying the lifeworld of rehabilitation practitioners through their story-making and story-telling uncovers taken-for-granted assumptions and normative structures that may exist in rehabilitation medical and scientific culture, including practitioner training. We are interested in understanding these canonical breaches in order to make visible how practitioners make meaning while treating patients.