Rare diseases and the associative dialogue: resignifications for moral experiences.

Rare diseases and the associative dialogue: resignifications for moral experiences.

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;Pinto, Márcia;
Ciencia & saude coletiva 2019 Vol. 24 pp. 3673-3682
227
moreira2019rareciencia

Abstract

This paper aims to discuss the experience of relatives 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 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 relationships 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 promotion 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 social capital of health care.

Citation

ID: 61106
Ref Key: moreira2019rareciencia
Use this key to autocite in SciMatic or Thesis Manager

References

Blockchain Verification

Account:
NFT Contract Address:
0x95644003c57E6F55A65596E3D9Eac6813e3566dA
Article ID:
61106
Unique Identifier:
S1413-81232019001003673
Network:
Scimatic Chain (ID: 481)
Loading...
Blockchain Readiness Checklist
Authors
Abstract
Journal Name
Year
Title
5/5
Creates 1,000,000 NFT tokens for this article
Token Features:
  • ERC-1155 Standard NFT
  • 1 Million Supply per Article
  • Transferable via MetaMask
  • Permanent Blockchain Record
Blockchain QR Code
Scan with Saymatik Web3.0 Wallet

Saymatik Web3.0 Wallet