THE IMPACT OF SICKLE CELL DISEASE ON THE DAILY ROUTINE OF ADOLESCENTS

Abstract

The present study aimed to identify the impact of sickle cell disease on the daily lives of adolescents. Exploratory, descriptive, qualitative and quantitative research with 12 adolescents enrolled in an outpatient unit of the city of Curitiba, state of Paraná. Data collection was performed between January 15 and April 30, 2014. The theory of Social Representations was the reference of the research, and the technique used was Collective Subject Discourse methodology. Half of the adolescents were of African descent, and almost all of them were diagnosed at the National Newborn Screening Program – Guthrie test. The youngsters had some knowledge of the disease; most of them reported not feeling different from other adolescents not affected by the disease; there were frequent reports of pain, fatigue, medication use and limitations of social life; the most common reason for hospitalization was pain episodes. Educational actions in health services focused on the characteristics of the patients and their families, will minimize the impacts of the disease and promote the quality of life of adolescents with sickle cell disease.

Keywords

• Sickle cell disease
• chronic disease
• Adolescent
• Nursing in public health
• Qualitative research