“Eu vejo a hemodiálise como meu trabalho”: saberes e experiências de familiares de pessoas com doença renal crônica

Abstract

The research involves the theme of care nursing with emphasis on the family of the person in continuous hemodialysis (HD). In the field of this subject is the object of investigation: the knowledge of the family of the person subjected to the HD on chronic kidney disease (CKD), their beliefs, values and practices of health care, with reference to the process of nursing care in HD and primary health care (PHC) services. The research was theoretical contribution to the Cultural Diversity and Universality Care Leininger. Was defined as the overall goal of understanding the cultural knowledge of the relatives of a group of people on hemodialysis and CKD in relation to health care. The methodology used was ethnonursing. The initial scenario was a Unit of Renal Replacement Therapy (RRT), where the research subjects, relatives of individuals in continuous program of HD were identified. Then the main site became the home of the informants. Data collection was based on the techniques of participant observation and semi-structured interview type. Moreover, we applied a questionnaire to characterize the socio demographic and health profile of the informants. From the data analysis, four categories emerged: "I'm taking care of myself better,'m not one hundred percent, but I struggle": knowledge and health practices; "It's scary, but treating, caring can live with it": Chronic Kidney Disease; "In the first moment, the help they give is that at first would have to be permanent": family experience in the hemodialysis service; "Whenever you need is a damned difficult": Trajectory of the family in the healthcare network. The findings indicate that there is a behavioral factor from the health knowledge related to culture that define how to take care of it. Besides this, the experience the disease in question, in particular hemodialysis, be reflected in the biopsychosocial as well as way of life of family members. Finally, realize it is difficult for the individual and family to enjoy the concepts of universality, fairness and integrity from the attention network, impacting negatively on population health. It is expected that research promotes strategies for nursing care directed to the individual / family / culture congruent form community.