What is it like to be a patient?
The New Utrecht School has its origins in a collaboration between Utrecht University and the University of Amsterdam in a research tutorial that took place in February 2017: What is it like to be a patient?
Simulated care trajectory
During this tutorial, medical students and humanities scholars exchanged thoughts concerning the question: Which stories play a role in healthcare, and what is the role of stories in healthcare? They also participated in a simulated treatment trajectory of an adolescent patient with cystic fibrosis in order to experience the challenges of following a treatment regime.
This tutorial had as its goal to become acquainted with medical and humanities research related to self-experience; to gain insights into the relevance and importance of the self-experience of patients; and additionally, to learn how to establish connections between medical and humanities insights. To learn more of the experiences of those who took part, see this video report (Dutch only).
What is it like to be a patient? (Dutch only)
The role stories can play in healthcare
Narratives are not only a source of knowledge for researchers, but also an instrument that can be utilised in healthcare in order to seek a connection with the patient, and thus involve him or her in the caring process. For example, stories give patients the opportunity to give meaning to their experiences, and in turn, may allow practitioners and students to gain insights into their perspective. Stories also contribute to insights into (mental) conditions in which the “healthy” story has become contested. In addition, stories provide a means via which to enlarge the emphatic capacity of students and practitioners, and to reflect upon their own performance and professional identity.
However, this is a complicated matter, especially when involving the stories of patients who are under added pressure: for example, children with chronic illnesses, the elderly, and patients with psychosomatic or psychiatric conditions. After all, these cases concern “vulnerable storytellers”: patients with limited autonomy, whose self-experience is incoherent, in decline, or still developing. How can we recover the stories of these patients, who sometimes cannot speak for themselves, and employ them in healthcare in a productive manner?
The tutorial consisted of two components:
- a series of seminars in which students studied, discussed, and presented relevant literature and case studies to each other;
- a research project in which students participated in, and reflected upon, the simulated treatment trajectory of an adolescent patient with cystic fibrosis in order to experience the challenges of following a treatment regime.