title: The burden and quality of life of caregivers of sickle cell anemia patients taking hydroxyurea versus those not taking hydroxyurea.
abstract: OBJECTIVE
  To assess the burden and quality of life of caregivers of patients with sickle cell anemia taking hydroxyurea versus those of patients not taking hydroxyurea.
  
  
  METHODS
  A cross-sectional study was performed of caregivers of outpatients with sickle cell anemia in two public hospitals in Campo Grande, MS, from January through June 2010. The World Health Organization Quality of Life-BREF Scale and the Caregiver Burden Scale were used.
  
  
  RESULTS
  Of the 37 caregivers in this study, 81.1% were women, 73.0% were mothers, 59.5% were married, 54.1%were mulattos, 48.6% were housewives, 54.1% had family incomes of up to one minimum wage and 75.7% had onlycompleted elementary education. The mean duration of care provided (time after diagnosis) was 16.08 ± 9.88 yearsand 89.2% reported that they provided 24-hour care. Regarding health, 27.0% of study participants reported having physical and 13.5% emotional problems. There were no significant relationships between these variables either with the different domains or the total score of the WHOQOL-BREF comparing caregivers of patients taking hydroxyurea versusthose of patients not taking hydroxyurea. There was a moderate negative linear correlation between the WHOQOL-BREF and the Caregiver Burden Scale scores (linear correlation test of Pearson: p-value = 0.003, r = -0.477). The burden of caregivers of patients who did not take hydroxyurea was significantly higher than those of patients who took the medication in terms of general tension, disappointment, environment and total score (student t-test: p-value < 0.05).
  
  
  CONCLUSIONS
  In the perception of the caregiver, looking after sickle cell anemia patients represents a moderate negative burden.
authors.affiliation: Universidade Federal de Mato Grosso do Sul - UFMS, Campo Grande, MS, Brazil.
authors.forename: Luiz Bernardino Lima
authors.initials: LB
authors.lastname: da Silva
authors.forename: Maria Lúcia
authors.initials: ML
authors.lastname: Ivo
authors.forename: Albert Schiaveto
authors.initials: AS
authors.lastname: de Souza
authors.forename: Elenir Rose Jardim Cury
authors.initials: ER
authors.lastname: Pontes
authors.forename: Alexandra Maria Almeida Carvalho
authors.initials: AM
authors.lastname: Pinto
authors.forename: Olinda Maria Rodrigues
authors.initials: OM
authors.lastname: de Araujo