Genética comunitária e hemofilia em uma população brasileira

Cadernos de Saúde Pública

Vânia Maria Caio²  Roberto Benedito De Paiva E Silva¹  Luís Alberto Magna¹  Antonio Sérgio Ramalho¹ 

[1] ,Pontifícia Universidade Católica de Campinas Faculdade de Serviço Social Departamento de Metodologia e AçãoCampinas SP ,Brasil

关键词: Hemophilia;    Genetics;    Behavioral Genetics;    Community Genetics;    Hemofilia;    Genética;    Genética Comportamental;    Genética Comunitária;   

DOI  :  10.1590/S0102-311X2001000300014

来源: SciELO

【 摘 要 】

Hemophilia is an important hemorrhagic disease in Brazil, affecting about 1 out of every 10,000 males. Patient's self-perception of hemophilia and interaction with the community are relevant to the clinical management of this disease. We investigated several social, psychological, and community aspects of hemophilia in a Brazilian population (Campinas, São Paulo State), interviewing 30 hemophiliac males, a control sample comprised of 73 non-hemophiliac brothers, and 641 individuals from the community. According to our results, more severe social disability in the hemophiliac patient was related to economic factors, mainly unemployment; however, no difference was found in relation to marital status, reproduction, or education. Self-perception of changes in health and lifestyle by individuals with hemophilia showed frequent self-stigmatization, along with depression, anxiety, and insecurity. The community showed a widespread lack of familiarity with hemophilia (49%), viewing people with hemophilia with the kinds of prejudices often observed in relation to people with infectious diseases, like AIDS. The paper concludes by recommending that a community-based program be implemented to improve the social adjustment status of individuals with hemophilia.

【 授权许可】

CC BY   
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