1. Rare diseases and the associative dialogue: resignifications for moral experiences.
- Author
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Moreira MCN, Nascimento MAFD, Campos DS, Albernaz L, Costa ACCD, Barros LBP, Horovitz DDG, Martins AJ, Madureira AF, Oliveira NV, and Pinto M
- Subjects
- Adolescent, Catastrophic Illness psychology, Child, Delivery of Health Care organization & administration, Female, Focus Groups, Humans, Male, Peer Group, Rare Diseases diagnosis, Family psychology, Rare Diseases psychology, Social Capital, Stress, Psychological psychology
- 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.
- Published
- 2019
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