doença falciforme e qualidade de vida: um estudo da percepção subjetiva dos pacientes da fundação hemominas, minas gerais, brasil sickle cell disease and quality of life: a study on the subjective perception of patients from the fundação hemominas, minas gerais, brazil
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Abstract
This study aimed at investigating whether the concept of quality of life advocated by the World Health Organization can be applied to sickle cell patients, as this disease is an important public health problem in the country. A qualitative approach was utilized with the following guide question in the interview: "What is quality of life for you?" According to the patients' replies, the following domains were identified: physical, psychological, level of independence, social relationships, environment and spirituality/personal beliefs. Twenty-five patients took part in the study, 80% had hemoglobin SS and 20% hemoglobin SC. The average age was 33.3 years old, 56% of the patients were women and 44% were married. In relation to schooling, 12% had concluded the 4th grade of elementary school and 24% completed high school. Sickle cell disease represented a barrier in respect to work for 72% of the patients, which demonstrates its negative impact on the development of the work capabilities of the individuals. All quality of life domains advocated by the WHO were present in the patients' replies: physical domain in 84%, psychological and social relationships in 76%, level of independence in 60%, environment in 52% and spirituality/personal believes in 4%. To conclude, the aspects referring to multidimensionality and subjectivity, presented in the quality of life concept advocated by the WHO and represented by their domains, can be taken as a guide for studies which involve the quality of life in sickle cell patients.
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pereira2008revistadoena
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| Authors | ;Sônia A. S. Pereira;Clareci S. Cardoso;Stela Brener;Anna Bárbara F. C. Proietti |
| Journal | journal of computational and graphical statistics : a joint publication of american statistical association, institute of mathematical statistics, interface foundation of north america |
| Year | 2008 |
| DOI |
10.1590/S1516-84842008000500015
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