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

Abstract

The role of the patient and their family during their journey through the Emergency Department (ED) was previously incompletely described. Patients may leave with an incomplete understanding of their health problem and its treatment, having endured an often long and uncomfortable journey. Understanding that journey and how it might be improved is important. This thesis is an exploration of what patients and families are thinking and doing during their ED journey, using the concept of patient work, in order to make evident and to understand that work, how it relates to policy, and how that work might be made easier. My research objectives were to describe patient and family work, explain how that work related to the work of staff and the context of the ED and to identify interventions to improve that work. Taking a constructionist perspective and ethnographic approach, patients and families were observed in a major consultant led English ED that was open continuously. During one hundred hours of fieldwork, 51 patients not needing resuscitation or end of life care and 8 family members were observed. The field notes together with the patient’s clinical notes constituted the data set which underwent thematic analysis. The major themes of patient sense making and endurance were identified. Patient’s sense making was evident from their expectations and their informational exchanges with the clinician who determined and communicated the diagnosis and treatment plan to them. This occurred within a hierarchal framework with the clinician leading the enquiry and determining what was relevant to the immediate clinical problem at the expense of relational work with the patient. Patients complied and infrequently contributed or challenged outside of this. The comprehension of the information given to the patent was rarely effectively enquired of by the clinician. Consequently there was a risk that the lack of relational work and comprehension checking led to the patient’s sense making of their diagnosis and treatment plan being incomplete. Patients endured waiting, uncertainty and discomfort. Families worked closely with patients, helping with both sense making and endurance work whilst in the ED and in meeting their commitments beyond it. The description and explanation of the patient’s work whilst in the ED provided a means to identify interventions that could make that work easier. In conclusion, understanding patient and family work in this acute setting provides a new way to describe and understand what happens and why. That understanding can inform how care for patients during their ED journey can be improved.

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Identifiers

ORCID for Michael James Clancy: orcid.org/0000-0001-8669-5226

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

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

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