Grand Rounds Conference: Introducing Illness Narrative Research to a Care Team

It was exciting to be in a room full of people who care about the same kids that I do. I was sandwiched between a talk about clinical procedures/research protocols and patient care deliberations; I was a bit frazzled at first, but it was an honor to have the opportunity to present my English thesis research project to the Pediatric Oncology Care Team at Mott Children’s Hospital.

I loved looking out into the conference room and recognizing people who I’ve been learning from and working closely with over the past few weeks. Realizing that they were all here and interested in what I had to say.

As always, I felt as though I could have spoken better, but overall my research project presentation was a huge success. Everyone contributed valuable insight about the project, and I’ve captured some of the ideas that arose here:

When is it too early to approach patients after a new diagnosis?

There were mixed ideas about this. Some people thought that immediate diagnosis would leave patients and families more sensitive and vulnerable, so maybe we should wait to reach out to them. Others recognized that this is a valuable time within the illness experience. I’m not sure that we reached a consensus about this, but it will be something to keep in mind through recruitment.

What kind of editing will be done with the child’s narratives?

My goal is to keep these narratives as authentic as possible. I ideally do not want any editing of these narratives to occur prior to publishing; I want these narratives to be published with misspellings and all.

Will you be noting that your perspective as the sole researcher is subjective?

This was an interesting idea that I hadn’t thought about it, but it’s incredibly true. My presence during this narration and my in-person encounter with these children, these authors, will certainly bias my own perspectives and insight into these narratives. This is especially true considering that I am the only researcher who will be working with these children. I need to think about the implications of this idea more, but I’m glad it was brought up.

After the talk and discussion, it was incredible to sense the energy everyone had. The environment was charged with enthusiasm; everyone was impressed with how far this project has come and the potential it holds. I’m so glad that I will be able to work closely with these caring staff, and I hope that this research will transform the experience of these patients.

I was touched that a few people came up to me afterwards to suggest the following:

A book by a Medical Anthropologist about this taboo sphere. I hadn’t heard about it before, and I look forward to reading it!

A compelling video created by a pediatric oncology patient at Mott. Mary has documented her experience with cancer through photography, and she has composed a powerful song to accompany it.

I still have a lot to think about over the next few weeks (while I’m in Kenya!), but I can’t wait for my research to begin.

6 Comments

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

6 responses to “Grand Rounds Conference: Introducing Illness Narrative Research to a Care Team

  1. This is fascinating and much needed research! I look forward to reading more about it!

  2. I’m surprised you hadn’t thought about your own impact as researcher. I’m studying health psychology, and currently doing preparatory reading before starting research into the lived experience of having a neurological condition. My lecturer / supervisor has taken us through a number of readings on reflexivity – i.e. paying close attention to what you as the researcher bring to the research. I can give you some references if you would like.

    • Thanks for your insight, cannopener. I guess I should clarify that what really surprised me was not so much the subjectivity of my perspective but rather how this would appear in a literary analysis of the pediatric narratives. How does familiarity with an author affect one’s analysis of their written word? Because I plan to focus on the writings generated rather than the verbal conversation for the scope of my thesis, I am curious about how to take this into consideration. Medical Anthropology has certainly helped me to shape this research in a culturally sensitive manner that recognizes the researcher’s position, but any references that you can note would be of great interest to me. Thanks for sharing your experience and suggestion!

      • That is a little different from the reflexivity we undertake as health psychology researchers. As to how, though, I’d recommend this article:
        DOI: 10.1177/104973202129120052
        Qual Health Res 2002; 12; 531
        Linda Finlay
        “Outing” the Researcher: The Provenance, Process, and Practice of Reflexivity
        Obviously it’s from my area of study but it talks about how you can incorporate that kind of self-awareness at each stage of the research process – and how not to overdo it. :)
        Good luck with your studies!

      • Thanks for sharing, cannopener! This is definitely helpful to consider another point of view, and I greatly appreciate your perspective. Thanks again!

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