Experiência de adoecimento e cuidado de família que vivencia a condição crônica por anemia falciforme de dois adolescentes

Abstract

This study aimed to understand what impact the experience of illness and care have in the life of a family that experiences the chronic condition of sickle cell anaemia of two teenagers. It is a qualitative study, developed through the case study of family composed by his father, with sickle cell anaemia; the mother carries the sickle cell trait; the first daughter of couple dies at age of two, due to the aggravation of the disease; and two teenage children, both with sickle cell anaemia. We employ the methodological approach of the History of Life Focal operationalized by the in-depth interview and accompanied observation. The organization and analysis of data was made possible primarily by the use of analytical tools Therapeutic Itineraries (IT) - genogram, ecomap and design of trajectories lines for care. It also emerged from the narratives of meaning units, and from these, draw four lines of direction of the study: 1) “The daily life of a family who witness a chronic condition of sickle cell anaemia in two adolescents”; 2) “Understanding the disease sickle cell anaemia and the need for care modeled individually”; 3) “Affect produced by services and health professionals in the illness experience by sickle cell anaemia”; 4) “Professionalization of family care in illness experience by sickle cell anaemia.” The results indicate that, although the same injury that affects the two brothers, each of witness in their own ways, family requiring different ways of organizing time and space and to seek, produce and manage the care needed for each adolescents. The presentation of some of the care required by children and adolescents with sickle cell anaemia, how professional practices are being produced and how arduous the trajectory has been undertaken by the family in finding solutions to health problems presented by them, allowed us to apprehend that the services and health professionals also participate in some way little implicated and resolutive in this care. He called attention in particular, the fact that the mother turn professional and technical nursing, stimulated by the recognition of this inadequacy in order to constitute professional practices, seeking thereby to recognize and meet the necessary care his sons, even some considered to be strictly business nature. This situation seems to patent the importance of nursing care to the person in chronic condition of sickle cell anemia. The experience of this family leads us to believe that the professional practices, such as family care, should be produced in a more personalized, modeling according to the requirements of each person. We emphasis that, although there are policies 12 and programs established to organize management practices and health care of people with sickle cell disease in our state, they alone, are ineffective for the integral and effective attention to the needs of people with this condition. In this sense, it seems that the Primary Attention of Health, with ordinator of practices, coupled with the Health Strategy of family could materialize as expected effectiveness of this care, minimize the immense range of suffering that the person illness and family if see submitted, often, so needlessly.