Author:

• Martha Cristina Nunes Moreira - Moreira, M. C. N. - Rio de Janeiro, RJ - <moreira@iff.fiocruz.br>
ORCID: https://orcid.org/0000-0002-7199-3797

Co-author(s):

• Marcos Antonio Ferreira do Nascimento - Nascimento, M. A. F - <m2nascimento@gmail.com>
ORCID: https://orcid.org/0000-0002-3363-4232
• Daniel de Souza Campos - Campos, D. S - <daniel.ufano@gmail.com>
ORCID: https://orcid.org/0000-0002-8937-7474
• Lidianne Albernaz - Albernaz, Lidianne - <lidianne.albernaz@gmail.com>
ORCID: https://orcid.org/0000-0003-2449-1142
• Ana Carolina Carioca da Costa - Costa, A.C.C - <carol.carioca@gmail.com>
ORCID: https://orcid.org/0000-0002-9456-3319
• Letícia Baptista de Paula Barros - Barros, L. B. P - <let.paulabarros@gmail.com>
ORCID: https://orcid.org/0000-0001-6610-9357
• Dafne Dain Gandelman Horovitz - Horovitz, D.D.G - <dafne@iff.fiocruz.br>
ORCID: https://orcid.org/0000-0001-7726-4301
• Antilia Januaria Martins - Martins A.J - Rio de Janeiro, RJ - <antiliamartins@gmail.com>
ORCID: https://orcid.org/0000-0003-1617-8033
• Adelino Furtado Madureira - Madureira, AF - <adelino.madureira@gmail.com>
ORCID: https://orcid.org/0000-0001-9963-9290
• Nicole Velloso de Oliveira - Oliveira, N.V - <vellosonicole@gmail.com>
ORCID: https://orcid.org/0000-0002-3653-7956
• Márcia Pinto - Pinto, M - <mftpinto@gmail.com>
ORCID: https://orcid.org/0000-0001-7568-5014

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.

Content:

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