0406/2023 - Experiências e estratégias de pessoas com doença falciforme no Distrito Federal: a ruptura biográfica Experiences and strategies of people with Sickle Cell Disease in the Federal District: the biographical rupture
Trata-se de um estudo sobre a Doença Falciforme, enfermidade crônica que afeta muitas pessoas no Brasil. O objetivo foi compreender como as pessoas lidam com as adversidades oriundas do diagnóstico e a ruptura biográfica. A descrição das experiências e estratégias empregadas pelas pessoas compuseram um quadro que expressa os habitus dos entrevistados, construídos em relação dialética com a vulnerabilidade determinada pela doença. A abordagem foi qualitativa e empregou entrevistas focadas como propostas por Merton, a técnica bola de neve aplicada em grupos relacionados a doença falciforme em redes sociais. Sete participantes foram selecionados por serem informantes privilegiados, portadores da doença, maiores de dezoito anos, moradores no Distrito Federal e usuários não exclusivos do Sistema Único de Saúde. O material das entrevistas foi categorizado a partir dos núcleos focais empregados. Os resultados apontaram as categorias: ruptura biográfica, experiência e estratégias de enfrentamento, atenção à saúde. Concluímos que é necessária uma sensibilização dos profissionais e da população sobre as dificuldades da condição de vida das pessoas com a doença falciforme e a consolidação das políticas públicas e das redes de atendimento para acolher essa população.
This is a study on sickle cell disease, a chronic illness that affects many people in Brazil. The aim was to understand and analyze how people deal with the adversities arisingthe diagnosis and the biographical rupture. The description of people\'s experiences and the strategies they use form a picture that expresses the interviewees\' habitus, constructed in a dialectical relationship with the vulnerability determined by the disease. The approach was qualitative and used focused interviews as proposed by Merton, combined with the snowball technique, applied to groups related to sickle cell disease on social networks. Seven participants were ed because they were privileged informants who had the disease, were over eighteen, lived in the Federal District and were non-exclusive users of the Unified Health System. The materialthe interviews was categorized based on the focal nuclei used. The results showed the following categories: biographical rupture, experience and coping strategies, health care. We conclude that there is a need to raise awareness among professionals and the population about the difficulties of the living conditions of people with sickle cell disease and to consolidate public policies and care networks to accommodate this population.
Keywords:
Sickle cell disease, chronic disease, experience, social vulnerability
Experiences and strategies of people with Sickle Cell Disease in the Federal District: the biographical rupture
Resumo (abstract):
This is a study on sickle cell disease, a chronic illness that affects many people in Brazil. The aim was to understand and analyze how people deal with the adversities arisingthe diagnosis and the biographical rupture. The description of people\'s experiences and the strategies they use form a picture that expresses the interviewees\' habitus, constructed in a dialectical relationship with the vulnerability determined by the disease. The approach was qualitative and used focused interviews as proposed by Merton, combined with the snowball technique, applied to groups related to sickle cell disease on social networks. Seven participants were ed because they were privileged informants who had the disease, were over eighteen, lived in the Federal District and were non-exclusive users of the Unified Health System. The materialthe interviews was categorized based on the focal nuclei used. The results showed the following categories: biographical rupture, experience and coping strategies, health care. We conclude that there is a need to raise awareness among professionals and the population about the difficulties of the living conditions of people with sickle cell disease and to consolidate public policies and care networks to accommodate this population.
Palavras-chave (keywords):
Sickle cell disease, chronic disease, experience, social vulnerability
da Costa, J. L., Montagner, M.I., Montagner, M.A., Alves, S. M. C., Delduque, M.C.. Experiências e estratégias de pessoas com doença falciforme no Distrito Federal: a ruptura biográfica. Cien Saude Colet [periódico na internet] (2023/Dez). [Citado em 02/07/2024].
Está disponível em: http://cienciaesaudecoletiva.com.br/artigos/experiencias-e-estrategias-de-pessoas-com-doenca-falciforme-no-distrito-federal-a-ruptura-biografica/19032?id=19032
