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.
Highlights
We discuss the context of chronicity with the moral experience of rare disease through a double movement: 1) that of organized civil society that acts in the face of stigma, formulates campaigns, promotes visibility and affirmation of identity; 2) the quality of bonds, networks of reference linked to the movement of association and dialogue with the State, the determinant actor for the recognition of rights
Regarding rare health conditions – unlike other studies with chronic health conditions of higher prevalence in the population or that are better known – no repertoire of knowledge shared by professionals of the different levels of health care and by the general population is available. This demarcates a vital difference that interferes with the diagnosis and treatment itineraries, the capacity of people linked to the family networks and institutions that dialogue with them, to understand, name, and have a representational repertoire to address their challenges. Articulating this proposition to the concept of moral experience, we highlight two axes: (a) shock as a biography-linked emic category; (b) non-choices as a component of moral experience linked to the costs of the rare health condition
Coping with the rare moral experience of illness through the search for peers, equal and informed in this experience should be read as an associative experience of shared social capital
Summary
We discuss the context of chronicity with the moral experience of rare disease through a double movement: 1) that of organized civil society that acts in the face of stigma, formulates campaigns, promotes visibility and affirmation of identity; 2) the quality of bonds, networks of reference linked to the movement of association and dialogue with the State, the determinant actor for the recognition of rights. The National Policy of Comprehensive Care for People with Rare Diseases (Ordinance No 199/2014) recognizes the sentence “rare diseases”, removing the particularity of diagnoses, gathering what is common to definitions of what is “rare”, and the needs that diseases that reach 65 per 100,000 people can demand. This policy has advanced in the discussions with associations, aimed at people with rare diseases, regardless of whether they are genetic or not
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