Investigating Illness Narratives

Image courtesy of Antonio Litterio: BY-SA.

In permeating across disciplines, illness narrative research attains a level of potency, one that spans the globe. Dr. Ingrid Egerod, a nurse from the University of Copenhagen, spoke on Tuesday about “ICU patient diaries and follow up in Nordic countries.” She highlighted how narrative is being used by ICU nurses to enhance care in Nordic countries.

What is unique about ICU patients is that many spend weeks at a time unconscious, and later they are unable to remember the ICU. This dark vacuum of memory can be the cause of alarm for many patients, creating friction that sparks psychological discomfort for a patient in later years.

In the Nordic countries, nurses like Ingrid Egerod aim to fill this void by creating ICU patient diaries to capture the day-to-day lives of these patients. Unlike hospital charts, these records string together ICU events to create a coherent ICU experience. These diaries then become tools to aid patients in reconstructing their time in the ICU and creating their own illness narrative.

These have had an incredible impact on many members of the ICU scene, ranging from nurses to families to patients. This task seems to renew a sense of purpose for nurses and to help families to understand the progression of medical events through story. Egerod and others have demonstrated that patient diaries decrease the occurrence of Post-Traumatic Stress Disorder in ICU patients. After patients are presented with their diaries, nurses follow-up with them  and use the diary as a guideline for conversation. These narrative activities are now being extended to include patients and families who are encouraged to use writing as a therapeutic form of expression.

It was fascinating to hear about this illness narrative research and to think about how narrative can adapt to and address the needs of the ICU unit and others. I also found it exciting to see that the idea of narrative is growing in other countries as well.

Here were some of the questions that I had, along with paraphrased answers provided by Dr. Egerod.

• How are these ideas being received globally?

There appears to be enthusiasm for narrative and a growing appreciation for the patient experience, but especially in countries like the U.S. where nurses are often overwhelmed as it is, the obligation of ICU patient diaries can become a burden. This is definitely an obstacle, but it’s important to recognize the long-term benefits of this immediate investment; reducing psychological distress from the start can lead to less problems down the road.

• Have there been efforts to publish these narratives so that other patients and health professionals can learn from these experiences?

Not so much, due to the intimacy of these narratives. Excerpts have been cited in journal articles, but these diaries have been primarily a resource for the immediate people involved in each narrative.

• How do physicians play a role in the ICU patient diaries?

It seems as though physicians are more backstage for these efforts. Nurses have adopted the ICU patient diaries as something of their own, and doctors are less involved actively in the daily care.

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I guess that’s what I’m trying to push again with my illness narrative research. I am glad to see that health professionals such as nurses are becoming more involved in narrative work, but I think that this is just as crucial for physicians. There may not be time for this level of engagement on each person’s part, but I believe that at least an awareness by all health professionals would make a difference.