The Genesis of Illness Narrative Research

For 5 years, I have spent my Friday evenings volunteering with pediatric oncology patients at Mott Children’s Hospital. I admire these children, and their abilities to cope with their situations astound me. I have been fascinated by coping activities such as the Beads of Hope activity, where children make a necklace with beads that each represent a hospital procedure or milestone event in the course of their treatment. These activities give children an outlet to talk about their illness and to tell their story. By spending time with these patients, I have come to greatly value efforts to improve the patient experience and to support these children through their illnesses.

When I came to college with a fascination for medicine and a love for literature, I was uncertain about how to pursue both. I discovered the field of narrative medicine that embodies both these interests: it encourages an exploration of the “and” between literature and medicine. I am fascinated by how literature enables patient expression and provides others with insight into illness. As I explored illness narratives through an independent study, I became interested in studying the illness narratives of children with cancer for my thesis. There seemed to be a void of published narratives written by kids with cancer, and since I am fascinated by the therapeutic nature of the writing process, I crafted my own research project to approach these ideas. My research project is designed to give children the opportunity to explore the mediums of writing, drawing, and speaking to express their experience with cancer.

In the early stages of the project, I talked to individuals from a variety of disciplines in order to shape this interdisciplinary research. Scholars and researchers in the fields of English, Anthropology, Psychology, Child Life, Pediatric Palliative Care, and Pediatrics Hematology/Oncology all provided invaluable input to help me shape this project. I reached out to MPublishing through the UM Medical School to ensure that participating children will be even be provided with the opportunity to publish the narratives that they create in a compiled book.

The current status of this project is that with the help of my pediatric oncologist PI, Dr. Rajen Mody, and my faculty advisor, Melanie Yergeau, the IRB application has been submitted to IRB-MED. This project has received funding through the Honors Program in LSA and the English Department. The months of May and June will be spent developing recruitment materials and preparing for data collection, which will begin in July. The project will be an ongoing two year study and is estimated to include up to 100 patients. Narratives created in the months of May and June will be compiled and published as a narrative collection by as early as the end of 2013, and I hope that we can create multiple collections throughout the course of the study.

As an aspiring pediatric oncologist, I am incredibly excited to have the opportunity to conduct this research. I believe that not only will patients benefit from this therapeutic means of expression, but the created narratives will illuminate the experience of childhood cancer. This research will allow health professionals, parents, and even other children with cancer to better understand the illness. I look forward to interacting with these patients and using a literary lens to better understand their illness experience.


Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative

3 responses to “The Genesis of Illness Narrative Research

  1. I’m so excited to see where your research goes! Will you be blogging about it as you go through it in the coming year?


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