The work undertaken by patients and their families whilst in the Emergency Department

Abstract

Introduction: patients can stay a considerable length of time within Emergency Departments (EDs)and often leave with an incomplete understanding of their health problems and treatment. The complexity of how patients and their families make sense of emergency care and what they do throughout their journey is incompletely described, typically relying on retrospective interviews. This study describes the development of a typology of their thinking and doing, how it can be used to explain reported outcomes and potentially make the patient journey easier.

Method: this paper draws on the concept of patient work to explain how patient diagnostic and treatment journeys relate to the work of staff and their endurance of that journey. Observation and informal interviews with 51 adult patients and 8 family members were undertaken in an English ED. We construct a typology to develop the concept of patient and family work during their ED journey, and how this is shaped by a healthcare context (e.g., limited patient-staff relationships, overcrowding) that is very different from chronic illness contexts previously applying the concept.

Results: findings demonstrate how patients’ sensemaking work is shaped by their expectations and informational exchanges with the clinician, but gaps in sensemaking exist. Sensemaking interacts with endurance work, i.e., long waits in a noisy, public environment. Families participate, and often ameliorate patient sensemaking by seeking clarification, providing information, meeting patients’ commitments, and ease endurance work.

Conclusion: collective analysis of patients’ sensemaking and endurance work demonstrates how their diagnostic and treatment journeys shape patient experiences and navigation of ED healthcare encounters, with potential to inform interventions to ease this work.
Patient and staff contribution
This study was informed by prior co-design and observation work with patients and staff during the development of a checklist to help meet patient information needs. This highlighted the centrality of the patient -staff interaction and the need to better understand it by directly observing the patient journey.

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Identifiers

ORCID for Mark J. Johnson: orcid.org/0000-0003-1829-9912

ORCID for Joanne Turnbull: orcid.org/0000-0002-5006-4438

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