Name: Gisely Vieira Ramos Martins
Type: MSc dissertation
Publication date: 28/09/2015

Namesort descending Role
Lorena Barros Furieri Advisor *

Examining board:

Namesort descending Role
Lorena Barros Furieri Advisor *
Luzimar dos Santos Luciano External Examiner *
Maria Edla de Oliveira Bringuente Internal Examiner *
Paulete Maria Ambrosio Maciel Internal Alternate *

Summary: Sickle cell disease (SCD) is a very common genetic disease in Brazil, mainly in brown and black ethnic groups. Every year, more than 300,000 babies are born with severe form of sickle cell disease in the world. In Brazil, about 50 thousand people are carriers of the SCD. Such harm is characterized by genetic changes and the prevalence of hemoglobin S (HbS) rather than hemoglobin A, considered the regular one. Studies show that almost 80% of deaths from this disease occur in subjects under 30 years old. Thus, the aim of this study was to describe the knowledge of adolescents with
SCD about the disease and its treatment adherence. It is a descriptive and crosssectional research with qualitative approach. The method consisted in recording twenty individual interviews using a semi-structured form, targeting adolescents with sickle cell disease treated between March and May of 2015 at the hematology ambulatory of a federal public educational and research institution in Vitoria - ES. Study participants aged between 10 and 19 years with confirmed diagnosis for HbSS (sickle cell disease), Hb SC and HbS beta thalassemia. It was used the thematic analysis proposed by Minayo. The reports were fully transcribed and grouped by similarity, seeking the
relevant feelings. It was observed within the participants of this study the presence of risk factors that may jeopardize the development process of adolescents with sickle cell disease. The reports show little knowledge about the disease and the minimum care needed for self care. It is necessary, therefore, the participation of health professionals not only in prophylactic measures, but especially in the educational practices that aim to empower these young people in respect of self body care based in the understanding of their illness.

Keywords: sickle cell disease, adolescent, nursing.

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