Navigating, Negotiating, and Narrating: Re-Envisioning Patient-Centered Chronic Illness Care
Abstract
Patient-centered care (PCC) is ubiquitous in how we think about patient-practitioner encounters. But such a taken-for granted stance may unknowingly obscure how conversations actually unfold in real life. The purpose of this work is to unravel the disconnect between how patient-centered care is talked about and how it is implemented in the real world. The overarching research question that framed this study was: What are the influences that shape the unfolding of the conversations that occur at chronic illness health encounters and how does this unfolding influence the learning and execution of PCC? The aim of this research was to offer a conceptualization of how patients’ and practitioners’ approaches to interactions at health encounters influence how stories unfold. Two major research studies framed this work addressing these research questions: (1) how do patients prepare and shape their stories of illness in order to interact productively with health practitioners and (2) how do interactions between patients and health practitioners shape the stories told at encounters?
Using a constructivist grounded theory approach (CGT) a total of 32 participants -patients and practitioners- were interviewed using a semi-structured interview guide. Data collection and analysis was iterative using the constant comparative method.
We found that patients did a lot of work to engage in health interactions and that this work was invisible to practitioners. Despite this work, however, patients were often left feeling that the stories that unfolded at health encounters often remained incomplete. Combining the perspectives of both patients and practitioners, we described different types of incomplete stories, namely the hidden story, the interpreted story, and the tailored story. The shared dimensions of making choices, balancing time, and targeting priorities informed the conceptualization of ‘Getting Airtime’ as a framework to understand how chronic illness interactions unfold at encounters. Using the framework of Patient-Centered Clinical Method (PCCM) to address educational considerations and the framework of Minimally Disruptive Medicine (MDM) to address practice considerations, we propose a re-envisioning of patient-centered encounters that reduces patients’ health interaction work, builds information-sharing capacity, and prevents harmful gaps in storytelling.