Narrative-Based Diabetes Care Helps Patients and Physicians Connect
An argument for making sure physicians and those with Type 1 diabetes are sharing the same storyline.
Something positive is happening in health care. Clinicians are trying to re-humanize medicine by learning to become more attentive witnesses. They are turning to narrative—stories, poetry, movies, and other forms of expression— to better understand the subjective experiences of illness. In medical schools across the country, these so-called “narrative medicine” programs are on the rise. Such programs train caring professionals to apply knowledge of character, setting, plot, form, and temporality in the consulting room.
Major communication barriers currently exist between doctors and patients. Many doctors today are too busy recording diagnostic codes and other required information to meaningfully listen to their patients. Furthermore, doctors and patients perceive medical storylines differently. For instance, patients tend to explain the chronology of illness in personal terms (“The pain started when my mother died”). Doctors, on the other hand, tend to explain the chronology of illness in biological terms (“The pain started shortly after the onset of menopause”). Narrative training strengthens therapeutic bonds by teaching caregivers to better recognize the medical storylines that patients inhabit.
When it comes to diabetes, narrative knowledge could greatly improve providers’ ability to see the day-to-day reality of the condition, and this could improve their ability to make therapeutic recommendations. Diabetes doctors and nurses have easy access to biomedical data in their treatment of the disease, but laboratory results don’t give the full picture. Narrative training equips physicians to integrate qualitative data with quantitative data. It also enables them to develop tolerance for ambiguities and contradictions in their patients.
A 2006 study revealed that patient narratives significantly enhanced the information shared about blood glucose management between doctors and patients. People with Type 1 diabetes between the ages of 19 and 21 were given cameras to photograph their lives over four weeks. These photographs provided a visual narrative of diabetes, which revealed many behavioral routines for participants and physicians to discuss while examining blood glucose patterns. One participant photographed pastries in the window of a diner that she passed on her morning commute; these photographs prompted her to explain her annoyance with dietary restrictions and her struggles with dormitory-style living. Other participants photographed new piercings and tattoos, acquired against medical advice; these photographs suggested to researchers that “blending in with peers often becomes a bigger priority than diabetes management.” The researchers concluded that physicians should be made aware of such conflicts between identity and disease management if they are tasked with identifying the best course of treatment.
Narrative-based diabetes care could lead to a fuller understanding of how cultural attitudes, beliefs, and practices get under the skin and into the blood. Most analyses of the “social” factors of diabetes have prioritized socioeconomic factors. Intuitively, researchers have found that lower income correlates with poorer control of the disease. But how do other personal and social factors, such as one’s religious convictions or sense of self, determine the disease? If providers more carefully received patients’ stories—their beliefs, fears, hopes, and dreams—then they might better understand how personal and social circumstances shape biological processes.
A separate study suggests that narrative could improve diabetes treatment by enabling providers to respond to patients with more empathy. Medical students participated in a program in which they visited the homes of people with diabetes and listened to their daily stories over the course of two years. By emotionally connecting with patients, these medical students redoubled their interest in treating the chronic illness.
An increase in first-person narratives would also allow persons with diabetes to rewrite institutional narratives of the disease. Historically, the medical community and the public have attached certain storylines to diabetes, such as the “restitution” storyline. The restitution story, according to sociologist and disability scholar Arthur Frank, is a story in which the patient triumphs over the disease. It is quite popular in diabetes discourse, as evidenced by the “T1D warrior” rhetoric and by taglines like JDRF’s “race for the cure.” For many, the restitution story doesn’t do justice to the far-less-romantic experiences of many living with diabetes.
Narrative competence would enable members of the diabetes community to identify the prevailing genres and storylines and see which make sense of their experiences with diabetes. This doesn’t mean patients and physicians need degrees in literature to understand diabetes; it means that greater attention to the narrative elements of the disease—the plot of diabetes, the settings in which diabetes is lived, the conflicting narrations of it—might reveal the specific ways in which popular, scientific, and personal representations of diabetes conflict.
Narrative-based diabetes care would recognize that there are many diabetes stories, and it would provide individuals with the interpretive tools to better understand those stories and be moved to action by them.
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