Tailoring self-care education to heart failure patients through a narrative medicine approach using DNM, a web-based digital platform

Giovanni Menafra, Livia Pescarollo, Roberta Coluccia, Giovanna Gallo, Nadia Attalla El Halabieh, Caterina Santolamazza, Erika Pagannone, Cristina Cenci, Massimo Volpe, Marco Testa

Abstract


The burden of disease is changing worldwide, new concepts are needed to approach chronic conditions and the Italian National Plan for Chronicity suggests that empowerment, ability to cope and self-care should be the lever for the efficacy and efficiency of a modern health system. Nowadays, the most prevalent diseases are heart diseases, and particularly heart failure, the common final manifestation of many heart conditions, a highly prevalent, complex clinical syndrome, characterized by severe symptoms that affect functional capacity. The prevalence of heart failure is increasing, mostly because of the growing elderly population, and thus heart failure represents a major challenge for health care systems. Furthermore, about 60% of heart failure patients suffer from five or more comorbid conditions, which worsen prognosis and make management more complicated. One of the crucial tasks in heart failure management is to provide proper education to foster self-care, defined as the “naturalistic decision-making process that influences actions that maintain physiologic stability (maintenance), facilitate the perception of symptoms (symptom perception), and direct the management of those symptoms (management)”. Heart failure self-care can be influenced by attitudes, cognitive function, physical function, depression, social support, the presence of caregivers. Riegel and coworkers defined and validated a classification system or typology for the self-care capabilities of patients with heart failure, in which each patient was characterized as ‘expert’, ‘inconsistent’, or ‘novice’ in self-care, on the basis of a variety of characteristics. This classification is useful in clinical practice and for allocating resources to disease management efforts. Our work hypothesis is that education to self-care for heart failure patients, and their caregivers, may be best tailored exploiting the stories of illness peculiar to each patient, and to her/his human environment. To this aim, we propose a narrative medicine approach, performed using a web based digital platform called DNM (Digital Narrative Medicine), which allows to exploit the illness narratives of patients and caregivers in order to build an empathic digital network to personalize treatment.


Keywords


self-care; heart failure; narrative medicine; illness; education

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