Qualidade de vida relacionada à saúde de cuidadores de crianças e adolescentes com doença falciforme

Abstract

Sickle cell disease (SCD) is a genetic, hereditary, and chronic illness that affects, significantly, the health and well-being of people who have it, and can probably have a negative impact in the quality of life and health of caregivers. Even though nobody yet knows for sure the impact of this disease in the caregiver s health-related quality of life (HRQL). This study has as its objective the evaluation of the HRQL of caregivers of children and adolescents with sickle cell disease. Caregivers of children and adolescents aged 5 to 20 years old answered the 36-item Short Form Health Survey Questionnaire SF 36 . There were 26 individuals in the tested group and 218 individuals in the control group. The caregivers in the majority of the cases were the mothers, 88,5 % in the tested group, and 81,7% in the control group. In the tested group, the representatives' age varied from 24 to 50 years old (average rate = 37,5 years old), and it was similar to the number attained in the control group (average rate = 38 years old) (p=0,46). The caregivers of children and adolescents with sickle cell disease presented damage in their physical and mental components when compared to the control group (p 0,05). Significant associations didn t occur in the caregiver s scores according to clinical and demographic patient s variables (different hemoglobinopathies types, transfusions, complications related to the health, age, sex and quantity of siblings) or according to the caregiver s demographic variables (age, education, economic and matrimonial status). On the other hand, caregivers who had a chronic disease presented significantly smaller scores in the domain functional capacity, in comparison to caregivers who didn t have a chronic disease (p=0,03). The humor upset in some caregivers injured the mental component on them (p=0,04).As a conclusion, it is possible to affirm that there is physical and mental damage in the HRQL of caregivers of children and adolescents with sickle cell disease, when compared to caregivers of healthy children and adolescents. Caregivers with chronic disease presented a negative impact in the domain functional capacity. The humor upset in the caregivers committed negatively the mental domains.