“Sem um pingo de cor”: experiências de crianças e adolescentes com a Doença Falciforme na Paraíba
This article reflects on the perspectives of children and adolescents living with sickle cell disease or sickle cell anemia as it is known; problematized through the experience and the limits of life with the disease. It is a genetic disease that affects the black population, which has consequences...
| Main Authors: | , , |
|---|---|
| Format: | Article |
| Language: | Spanish |
| Published: |
Universidade Federal do Rio de Janeiro (UFRJ)
2021-01-01
|
| Series: | Desidades |
| Subjects: | |
| Online Access: | http://desidades.ufrj.br/featured_topic/sem-um-pingo-de-cor-experiencias-de-criancas-e-adolescentes-com-a-doenca-falciforme-na-paraiba/ |
| _version_ | 1827848377866387456 |
|---|---|
| author | Bruna Tavares Pimentel Ednalva Maciel Neves Flávia Ferreira Pires |
| author_facet | Bruna Tavares Pimentel Ednalva Maciel Neves Flávia Ferreira Pires |
| author_sort | Bruna Tavares Pimentel |
| collection | DOAJ |
| description | This article reflects on the perspectives of children and adolescents living with sickle cell disease or sickle cell anemia as it is known; problematized through the experience and the limits of life with the disease. It is a genetic disease that affects the black population, which has consequences for diagnosis and treatment. The study was carried out with parents, guardians, children and adolescents in cities and in the capital of Paraíba, Brazil. The dialogue with the interlocutors took place through the production of drawings and semi-structured interviews. This approach allowed us to conclude that the understandings and experiences of the disease associate it with a change in the blood, marked by crises of pain as a unique expression of the disease. The ignorance of health professionals about the disease, as well as in the school environment, reinforces the logic of institutional racism, resulting in bullying, prejudice of class and race |
| first_indexed | 2024-03-12T09:46:10Z |
| format | Article |
| id | doaj.art-798019375862457ab7c6f9977fab42ca |
| institution | Directory Open Access Journal |
| issn | 2318-9282 |
| language | Spanish |
| last_indexed | 2024-03-12T09:46:10Z |
| publishDate | 2021-01-01 |
| publisher | Universidade Federal do Rio de Janeiro (UFRJ) |
| record_format | Article |
| series | Desidades |
| spelling | doaj.art-798019375862457ab7c6f9977fab42ca2023-09-02T12:54:13ZspaUniversidade Federal do Rio de Janeiro (UFRJ)Desidades2318-92822021-01-01298299“Sem um pingo de cor”: experiências de crianças e adolescentes com a Doença Falciforme na ParaíbaBruna Tavares Pimentel0Ednalva Maciel Neves1Flávia Ferreira Pires2Bacharel e Licenciada em Ciências Sociais, mestra pelo programa de pós-graduação em Sociologia (PPGS) e pós-graduanda em Gênero e Diversidade na Escola, todos pela Universidade Federal da Paraíba (UFPB), BrasilDoutora em Antropologia Social pelo Programa de Pós-Graduação em Antropologia Social/ICH/UFRGS, Brasil, Professora dos Programas de Pós-Graduação em Antropologia e em Sociologia da Universidade Federal da Paraíba, Brasil. Pesquisadora do Grupessc/UFPB e do Mandacaru/UFAL, Brasil, integrante da Rede Antropologia e SaúdeGraduada em Ciências Sociais pela Universidade Federal de Minas Gerais (UFMG), Brasil. Mestre, Doutora e Pós-doutora pelo Museu Nacional, Universidade Federal do Rio de Janeiro (UFRJ), Brasil. Pós-doutora pela Universidade de Sheffield, Inglaterra, e UFMG; Pesquisadora do CNPq, Líder do CRIAS, Professora da Universidade Federal da Paraíba (UFPB), BrasilThis article reflects on the perspectives of children and adolescents living with sickle cell disease or sickle cell anemia as it is known; problematized through the experience and the limits of life with the disease. It is a genetic disease that affects the black population, which has consequences for diagnosis and treatment. The study was carried out with parents, guardians, children and adolescents in cities and in the capital of Paraíba, Brazil. The dialogue with the interlocutors took place through the production of drawings and semi-structured interviews. This approach allowed us to conclude that the understandings and experiences of the disease associate it with a change in the blood, marked by crises of pain as a unique expression of the disease. The ignorance of health professionals about the disease, as well as in the school environment, reinforces the logic of institutional racism, resulting in bullying, prejudice of class and racehttp://desidades.ufrj.br/featured_topic/sem-um-pingo-de-cor-experiencias-de-criancas-e-adolescentes-com-a-doenca-falciforme-na-paraiba/sickle cell anemiadisease experiencechildracism |
| spellingShingle | Bruna Tavares Pimentel Ednalva Maciel Neves Flávia Ferreira Pires “Sem um pingo de cor”: experiências de crianças e adolescentes com a Doença Falciforme na Paraíba Desidades sickle cell anemia disease experience child racism |
| title | “Sem um pingo de cor”: experiências de crianças e adolescentes com a Doença Falciforme na Paraíba |
| title_full | “Sem um pingo de cor”: experiências de crianças e adolescentes com a Doença Falciforme na Paraíba |
| title_fullStr | “Sem um pingo de cor”: experiências de crianças e adolescentes com a Doença Falciforme na Paraíba |
| title_full_unstemmed | “Sem um pingo de cor”: experiências de crianças e adolescentes com a Doença Falciforme na Paraíba |
| title_short | “Sem um pingo de cor”: experiências de crianças e adolescentes com a Doença Falciforme na Paraíba |
| title_sort | sem um pingo de cor experiencias de criancas e adolescentes com a doenca falciforme na paraiba |
| topic | sickle cell anemia disease experience child racism |
| url | http://desidades.ufrj.br/featured_topic/sem-um-pingo-de-cor-experiencias-de-criancas-e-adolescentes-com-a-doenca-falciforme-na-paraiba/ |
| work_keys_str_mv | AT brunatavarespimentel semumpingodecorexperienciasdecriancaseadolescentescomadoencafalciformenaparaiba AT ednalvamacielneves semumpingodecorexperienciasdecriancaseadolescentescomadoencafalciformenaparaiba AT flaviaferreirapires semumpingodecorexperienciasdecriancaseadolescentescomadoencafalciformenaparaiba |