What is not, but might be: The disnarrated in parents' stories of their child's cancer treatment

摘要

Abstract The study of illness narratives is based on the premise that stories are told for a reason and storytellers make narrative decisions on what to include and leave out of a story, the style of narration, the place where the story is told and the audience. Through this narrative work, they situate themselves in particular ways and make sense of the illness and the world around them. In this article, we explore the disnarrated, a style of narration that features events that do not happen, but are nonetheless referred to in the story. The aim of the article is to illustrate the additional layers of meaning that can be uncovered from illness stories when attention is paid to what did not happen, but, yet, is still part of the story. We draw from a qualitative study carried out with 17 parents whose children were diagnosed with cancer and were receiving medical care in Argentina. We carried out narrative interviews with the parents and participant-observation in hospital areas and the hotels where they resided during treatment. The analysis of the interview transcripts was carried out using a holistic understanding of the narratives and focusing on the identification of themes that appeared disnarrated. The fieldnotes from the observations were used to contextualize the narrative analysis. The disnarrated, in its many manifestations, produced a layer of analysis of parents' stories of treatment patterned by parents' desires, hopes and fears. The disnarrated was used by parents to discuss alternative care trajectories and express fears regarding what the future would bring for the child and family. The disnarrated is a useful analytical tool for examining illness stories as it points to storytellers’ views of what is acceptable or desirable in their world and their hopes and preferences for alternative realities. Highlights ? Parents of children with cancer use narratives to make sense of their world. ? Illness narratives can be analyzed by focusing on disnarrated events. ? The disnarrated can help identify storytellers' fears, hopes, and regrets.