Chronic Myeloid Leukemia patients’ life stories: finding a meaning in the illness experience and contributing to improve health-care quality

Every man/woman is actively constructing his/her unique life story that tells about life events and the way he/she has coped with them (Demetrio, 1996). Life stories are never fixed: adverse events (illness, grief, divorce…) sometimes happen and force us to reexamine our projects. To this regard, narration could be useful to take care of what has been experienced: it enables us to “name” experiences, reflecting on them and sometimes opening new perspectives (Zannini, 2008). In addition to the educational gain that can be experienced by the narrator (Chase, 2011), our intervention will present a project based on the hypothesis that what emerges from patients’ narratives could highlight useful directions for health professionals, to “take care” of patients’ life stories, offering a “global care”. The present project was aimed at collecting illness narratives of patients, members of the Italian Association of Chronic Myeloid Leukemia Patients (AIP-LMC). The proposal to re-think, while narrating, about one’s own experience, could represent for patients a chance to re-signify their illness story (Zannini et al., 2014). The project has a qualitative design, aimed at exploring participants’ illness narratives, intended as a powerful source of knowledge (Merrill & West, 2009). The method of Narrative Inquiry (Connelly & Clandinin, 2006) considers narration as an activity that allows to grasp the meaning of a lived experience. The project involved 11 patients selected on a voluntary basis. Each participant was involved in a narrative interview, to collect his/her illness story. The analysis of the interviews followed the Narrative Analysis model proposed by Lieblich, Tuval-Mashiach and Zilber (1998). Referring to literature (Guilhot et al., 2015) and to a holistic-content perspective, five common stages were found in the patients’ stories, even if each story was also analyzed considering its particular contents. The holistic analysis of form consented to individuate three stories of progression and eight stories of steadiness. What emerged from the analysis was presented and discussed during the 2016 annual Conference of AIP-LMC, which had been attended also by the medical staff