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

Authors

  • Márcia Helena de Souza Freire Universidade Federal do Paraná (UFPR).
  • Rafaela Aparecida Pereira Secretaria Municipal de Saúde de Curitiba.
  • Evelyn Juliana Ramos Fundação Estatal da Atenção Especializada à Saúde (FEAES).
  • Vanilde de Fátima Andrade Matos Hospital de Clínicas da Universidade Federal do Paraná.
  • Michelle Thais Migoto Universidade Federal do Paraná (UFPR).

DOI:

https://doi.org/10.5380/ce.v20i3.42027

Keywords:

Sickle cell disease, chronic disease, Adolescent, Nursing in public health, Qualitative research.

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.

Author Biographies

Márcia Helena de Souza Freire, Universidade Federal do Paraná (UFPR).

Doutora em Saúde Pública. Docente da Graduação e Pós-graduação do Departamento de Enfermagem da Universidade Federal do Paraná (UFPR).

Rafaela Aparecida Pereira, Secretaria Municipal de Saúde de Curitiba.

Residente em Saúde da Família pela Secretaria Municipal de Saúde de Curitiba.

Evelyn Juliana Ramos, Fundação Estatal da Atenção Especializada à Saúde (FEAES).

Enfermeira na Fundação Estatal da Atenção Especializada à Saúde (FEAES).

Vanilde de Fátima Andrade Matos, Hospital de Clínicas da Universidade Federal do Paraná.

Enfermeira Responsável pelo Ambulatório de Hematologia Pediátrica do Hospital de Clínicas da UFPR. Mestranda em Psicologia pela Universidade Tuiuti do Paraná.

Michelle Thais Migoto, Universidade Federal do Paraná (UFPR).

Enfermeira no Hospital Pequeno Príncipe. Especialista em neonatologia pela Universidade Estadual de Londrina (UEL). Mestranta em enfermagem pela Universidade Federal do Paraná (UFPR).

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Published

2015-09-24

How to Cite

Freire, M. H. de S., Pereira, R. A., Ramos, E. J., Matos, V. de F. A., & Migoto, M. T. (2015). THE IMPACT OF SICKLE CELL DISEASE ON THE DAILY ROUTINE OF ADOLESCENTS. Cogitare Enfermagem, 20(3). https://doi.org/10.5380/ce.v20i3.42027

Issue

Vol. 20 No. 3 (2015)

Section

ORIGINAL ARTICLE

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