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.
Moreira, M. C. N., Do Nascimento, M. A. F., Campos, D. de S., Albernaz, L., Da Costa, A. C. C., Barros, L. B. de P., … Pinto, M. (2019). Rare diseases and the associative dialogue: Resignifications for moral experiences. Ciencia e Saude Coletiva, 24(10), 3673–3682. https://doi.org/10.1590/1413-812320182410.11822019