Vivências em nutrição enteral exclusiva: percepções de pacientes e familiares

Abstract

In a scenario where oral food intake is absent, as in Exclusive Enteral Nutrition (EEN), the patients and their families, who accompany the hospitalization period, experience the repercussions of these events, which forces them to perform important internal live with this new condition. The present dissertation is composed of two empirical studies, qualitative and cross-sectional. Study 1 aimed to understand the perceptions of patients about the experience of SEN. Study 2 had as objective to know the perceptions of accompanying relatives about the experience in SEN. The sample size was defined by the saturation criterion, resulting in nine participants in each study. The instruments used were the semi-structured interview script and the researcher's field diary. The analysis and organization of the data was performed through the Thematic Analysis of Braun and Clarke and the theoretical reference of Theory of Social Representations, together with the scientific literature on the subject. For the patients, the results evidenced reports of physical damage with the use of the nasoenteral catheter. The presence of the sensation of physical hunger was not mentioned by the patients; yet there is a desire for food, which equates with the experience of hunger. The main difficulties experienced by the patients involve and poor communication by the health team and the reduction of autonomy. For the relatives, it was identified repercussions such as: social withdrawal, suspension of one's own priorities and food restrictions together with the patient. As expectations for the patients' conditions, the time fulfilling the role of caregiver and the fear of the patient death, were evident. The studies contribute to the understanding of the experience and relationship of the double patient-family, in addition to the health care offered to the subjects.