Storie di leucemia, storie di resilienza? : uno studio qualitativo basato sulle narrazioni di ex pazienti guariti

Introduction: in the paediatric age, the experience of leukaemia is considered a traumatic event, following which a surviving strategy is developed (they talk indeed of “cancer survivors”). Young patients’ reactions to leukaemia can be different. From a damage, leukaemia can be transformed by some of them into an opportunity. They activate some resilience strategies, that allow them to positively cope to illness. Leukaemia illness narrative, besides allowing to understand what consented to the patient to cope to his/her illness, is considered itself a resilience strategy. Aims: through a qualitative study, based on written illness narratives, we wanted to analyze how leukaemia was remembered and how it impacted on patients’ existence, trying to discover resilience strategies in their illness narratives. More specifically, we analyzed both the roles of family and of health professional staff in supporting the implementation of a resilience process. Methods: 300 healed patients, more than 18 years old, and that had interrupted the therapy from at least 5 years, were contacted by letter or by e-mail. One hundred and five responded to the invite of narrating their illness experience. The written narratives were analyzed with the Grounded Theory method. Two researchers separately individuated and labeled the concepts outlining from narratives, grouped them in categories and then in themes. Findings: five themes emerged from the analysis of the illness narratives: (1) memories of illness and the related feelings (fear and anger); (2) changes that followed the illness: in the immediate: body change; in the medium period: some experiences of being excluded by adolescents peers; in the long period: personality building (stronger, more sensitive and “richer”); (3) resilience strategies activated to cope to the illness, aided both by external factors (family, health professional staff) and internal factors (willing of fighting and living); (4) the current illness experience, generally positive, with some fear for relapse; (5) gratitude to the health professional staff. Many leukemia stories can be intended as resilience stories, in which an opportunity derived from a damage. In these stories a therapeutic alliance among health professionals, families and, moreover, young patients, was discovered. Conclusions: the written illness narrative has revealed a useful strategy to deeper understand the leukemia experience and to comprehend how it can develop a resilience process.