Abstract

ROSANELI, Caroline Filla; BROTTO, Aline Maran  and  FISCHER, Marta Luciane. Rare diseases and communication barriers: a bioethical analysis. Rev. Bioética y Derecho [online]. 2021, n.52, pp.139-154.  Epub Oct 25, 2021. ISSN 1886-5887.  https://dx.doi.org/10.1344/rbd2021.52.34155.

Currently there are an average of 300 million people with some type of rare disease in the world. These diseases are progressive, degenerative and can be fatal, affecting mostly children. Rare diseases are part of a therapeutic itinerary that is often long and exhaustive. When discussing rare diseases, automatically, you should think of a triad person with rare disease, family, and health professionals. In order to have a relationship between the three, communication is necessary. The objective of this paper is to analyze the communication barriers in health care for the triad patient, family, and technical team along the therapeutic itinerary. The method used in this article is a reflexive analysis of communication barriers at the academic, technical and personal levels. A reflexive synthesis about communication barriers was created through a bioethical perspective, to transform the space of the other through actions that minimize social, individual, institutional and moral vulnerabilities. It is perceived that it is necessary to disseminate communicative styles and practices in order to make the use of adaptative communication strategies more natural in the daily life of society, as well as the intensification of training and technical information about care in rare diseases, as communication starts at the moment of diagnosis and is perpetuates throughout life. Bioethics must embrace, observe and act through fair, safe and dignified strategies. Therefore, it is concluded that it is extremely important to discuss rare diseases in academia, so that there is an increasingly critical development in relation to technical and ethical procedures.

Keywords : Rare disease; vulnerability; bioethics; communication; strategy; health; right.

        · abstract in Portuguese | Spanish | Catalan     · text in Portuguese     · Portuguese ( pdf )