0514/2018 - A participação dos conviventes com a doença falciforme na atenção à saúde: Um estudo bibliográfico. The participation of cohabitants with sickle cell disease in health care: A bibliographic study.
O artigo tem por objetivo analisar a produção científica publicada acerca da participação dos sujeitos da doença falciforme (DF) e seus familiares, bem como sobre a autonomia e os aspectos sociais relacionados a esses sujeitos. Metodologicamente, utilizou-se pesquisa bibliográfica de cunho qualitativo com os descritores “doença falciforme” e “participação”. Como resultados, afiguraram-se os seguintes temas: (1) Experiência do adoecimento, destacando a convivência e as questões étnico-raciais; (2) Participação em pesquisas e o olhar dos profissionais de saúde sobre a DF; e (3) Autonomia dos conviventes e tomada de decisão. Conclui-se que a promoção da participação desses portadores nos estudos, seja de uma forma instrumental, seja para melhor contextualizar os resultados, seja – ainda – para enriquecer as conclusões dos autores, pode – intencionalmente ou não – contribuir para a maior visibilidade do problema que envolve ser portador da DF para os sujeitos e seus familiares. Destaca-se também o dever de se analisar interseccionalmente todo o contexto do paciente e seu contexto familiar.
The scope of this article was to analyze the published scientific production about persons to live with sickle cell disease (SCD) and their families, about the autonomy around therapeutic choices besides the social aspects. The bibliographical research was used the descriptors “sickle cell disease” and “participation”. In terms of results, the following themes appeared: (1) Experience of illness, highlighting the coexistence and ethnic-racial issues; (2) Participation in research and the view of health professionals about the SCD; and (3) Autonomy of acquaintanceship and and decision making.It is concluded that the promotion of the participation of these people in the studies, either in an instrumental way, or to better contextualise the results, or even to enrich the authors\' conclusions, can - intentionally or not - contribute to the greater visibility of the problem which involves being a carrier of DF for the subjects and their relatives. It is also necessary to analyze intersectionally the entire context of the acquaintanceship.
Keywords:
Sickle Cell Disease; Participation, Review Literature; Qualitative Research
The participation of cohabitants with sickle cell disease in health care: A bibliographic study.
Resumo (abstract):
The scope of this article was to analyze the published scientific production about persons to live with sickle cell disease (SCD) and their families, about the autonomy around therapeutic choices besides the social aspects. The bibliographical research was used the descriptors “sickle cell disease” and “participation”. In terms of results, the following themes appeared: (1) Experience of illness, highlighting the coexistence and ethnic-racial issues; (2) Participation in research and the view of health professionals about the SCD; and (3) Autonomy of acquaintanceship and and decision making.It is concluded that the promotion of the participation of these people in the studies, either in an instrumental way, or to better contextualise the results, or even to enrich the authors\' conclusions, can - intentionally or not - contribute to the greater visibility of the problem which involves being a carrier of DF for the subjects and their relatives. It is also necessary to analyze intersectionally the entire context of the acquaintanceship.
Palavras-chave (keywords):
Sickle Cell Disease; Participation, Review Literature; Qualitative Research
Lopes, W.S.L, Gomes, R.. A participação dos conviventes com a doença falciforme na atenção à saúde: Um estudo bibliográfico.. Cien Saude Colet [periódico na internet] (2018/dez). [Citado em 22/12/2024].
Está disponível em: http://cienciaesaudecoletiva.com.br/artigos/a-participacao-dos-conviventes-com-a-doenca-falciforme-na-atencao-a-saude-um-estudo-bibliografico/17047?id=17047&id=17047
