Adoecimentos raros e o diálogo associativo: ressignificações para experiências morais
Adoecimentos raros e o diálogo associativo: ressignificações para experiências morais
Data
2019
Autores
Moreira, Martha Cristina Nunes
Nascimento, Marcos Antonio Ferreira do
Campos, Daniel de Souza
Albernaz, Lidianne
Costa, Ana Carolina Carioca da
Barros, Letícia Baptista de Paula
Horovitz, Dafne Dain Gandelman
Martins, Antilia Januária
Madureira, Adelino Furtado
Oliveira, Nicole Velloso de
Journal Title
Journal ISSN
Volume Title
Publisher
Ciência & Saúde Coletiva
Resumo
Neste artigo, buscamos discutir a ex-
periência 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 ca-
tastrófico, mobilizando recursos para significação
e sentido que possibilitem reconstruções identi-
tárias, valoração de novas trajetórias a partir de
um diagnóstico raro, assim como a busca de pares.
Nesse sentido, é fundamental a construção de re-
lações de reconhecimento, alteridade e pertenci-
mento. A partir de uma perspectiva interacionista
simbólica, os resultados mostram dois núcleos: (1)
o susto como surpresa diante do diagnóstico ines-
perado, 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 associati-
vo como possibilidade de fortalecimento e constru-
ção de capital social de cuidado à saúde.
This paper aims to discuss the expe- rience of relatives of children and adolescents with rare diseases as a moral experience. Moral expe- rience is characterized by suffering that is socially interpreted as a catastrophic event, mobilizing re- sources for signification and meaning that allow the reconstruction of identity, the appreciation of itineraries from a rare diagnosis, as well as the search for peers. Thus, the construction of rela- tionships of recognition, alterity, and belonging is fundamental. From a symbolic interactionist perspective, the results show two significant cores: (1) shock as a surprise in the face of an unexpected diagnosis, leading to the search for peers and pro- motion of social recognition; (2) the cost involved with the course of a rare disease that implies a care work and the acquisition of associative capital as a possibility of strengthening and building the so- cial capital of health care.
This paper aims to discuss the expe- rience of relatives of children and adolescents with rare diseases as a moral experience. Moral expe- rience is characterized by suffering that is socially interpreted as a catastrophic event, mobilizing re- sources for signification and meaning that allow the reconstruction of identity, the appreciation of itineraries from a rare diagnosis, as well as the search for peers. Thus, the construction of rela- tionships of recognition, alterity, and belonging is fundamental. From a symbolic interactionist perspective, the results show two significant cores: (1) shock as a surprise in the face of an unexpected diagnosis, leading to the search for peers and pro- motion of social recognition; (2) the cost involved with the course of a rare disease that implies a care work and the acquisition of associative capital as a possibility of strengthening and building the so- cial capital of health care.
Description
Palavras-chave
Doenças raras, Crianças e adolescentes, Experiência moral, Associativismo civil, Rare diseases, Children and adolescents, Moral experience, Civil associativism
Citação
Moreira MCN, Nascimento MAFD, Campos DS, Albernaz L, Costa ACCD, Barros LBP, Horovitz DDG, Martins AJ, Madureira AF, Oliveira NV, Pinto M. Rare diseases and the associative dialogue: resignifications for moral experiences. Cien Saude Colet. 2019 Sep 26;24(10):3673-3682. Portuguese, English. doi: 10.1590/1413-812320182410.11822019