0209/2019 - Adoecimentos raros e o diálogo associativo: Ressignificações para experiências morais. Rare diseases and the associative dialogue: Re-significances for moral experiences.
Nesse artigo, buscamos discutir a experiência de familiares de crianças e adolescentes com doenças raras como uma experiência moral. A experiência moral se caracteriza pelo sofrimento que é lido, coletivamente, como acontecimento catastrófico, mobilizando recursos para significação e sentido que possibilitem reconstruções identitárias, valoração de novas trajetórias a partir de um diagnóstico raro, assim como a busca de pares. Nesse sentido, é fundamental a construção de relações de reconhecimento, alteridade e pertencimento. A partir de uma perspectiva interacionista simbólica, os resultados mostram dois núcleos: (1) o susto como surpresa diante do diagnóstico inesperado, levando a busca de pares e promoção do reconhecimento social; (2) o custo envolvido com a trajetória de uma doença rara que implica um trabalho de care e a aquisição de capital associativo como possibilidade de fortalecimento e construção de capital social de cuidado à saúde.
Palavras-chave:
doenças raras; crianças e adolescentes; experiência moral, associativismo civil.
Abstract:
In this article, we seek to discuss the experience of family members of children and adolescents with rare diseases as a moral experience. Moral experience is characterized by suffering that is socially interpreted as a catastrophic event; mobilizing resources for meaning that enable the reconstruction of identity, valuation of new trajectories based on a rare diagnosis, as well as the search for peers. In this sense, the construction of relations of recognition, alterity and belonging is fundamental. From a symbolic interactionist perspective, the results show two major issues: (1) the fright as a surprise in the face of an unexpected diagnosis, leading to the search for peers and the promotion of social recognition; (2) the cost involved with the trajectory of a rare disease that implies a care work and the acquisition of associative capital as a possibility of strengthening and building social capital of health care.
Keywords:
rare diseases; children and adolescents; moral experience, civil associativism.
Rare diseases and the associative dialogue: Re-significances for moral experiences.
Resumo (abstract):
In this article, we seek to discuss the experience of family members of children and adolescents with rare diseases as a moral experience. Moral experience is characterized by suffering that is socially interpreted as a catastrophic event; mobilizing resources for meaning that enable the reconstruction of identity, valuation of new trajectories based on a rare diagnosis, as well as the search for peers. In this sense, the construction of relations of recognition, alterity and belonging is fundamental. From a symbolic interactionist perspective, the results show two major issues: (1) the fright as a surprise in the face of an unexpected diagnosis, leading to the search for peers and the promotion of social recognition; (2) the cost involved with the trajectory of a rare disease that implies a care work and the acquisition of associative capital as a possibility of strengthening and building social capital of health care.
Palavras-chave (keywords):
rare diseases; children and adolescents; moral experience, civil associativism.
Moreira, M. C. N., Nascimento, M. A. F, Campos, D. S, Albernaz, Lidianne, Costa, A. C. C, Barros, L. B. P, Horovitz, D.D.G, Martins A.J, Madureira, AF, Oliveira, N.V, Pinto, M. Adoecimentos raros e o diálogo associativo: Ressignificações para experiências morais.. Cien Saude Colet [periódico na internet] (2019/jul). [Citado em 23/12/2024].
Está disponível em: http://cienciaesaudecoletiva.com.br/artigos/adoecimentos-raros-e-o-dialogo-associativo-ressignificacoes-para-experiencias-morais/17283?id=17283
