Abstract

BROTTO, Aline  and  ROSANELI, Caroline. Vulnerabilities of family caregivers of patients with rare diseases: an integrative review. Psic., Saúde & Doenças [online]. 2021, vol.22, n.2, pp.659-673.  Epub Aug 31, 2021. ISSN 1645-0086.  https://doi.org/10.15309/21psd220228.

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 their many children, from an often long therapeutic itinerary. When he talks about rare diseases, he talks about who accompanies and cares for these people, as well as about their health / disease process. Family caregivers and people with rare diseases experience a complex reality, full of vulnerabilities, such as: programmatic, individual, social and moral vulnerability. The aim of this study is to analyze, from a bioethical point of view, the vulnerabilities of family caregivers of patients with rare diseases. The method is an integrative review of the Bireme.org and Scielo.org databases, with full texts, in Portuguese, Spanish and English, published from 2009 to 2019. It created a table that looks at how vulnerabilities and causes a relationship with how analyzes were performed the texts of the databases already cited. Perhaps a programmatic vulnerability is present in most texts, and a moral vulnerability has not shown so little in the speech of family caregivers. Conclude if it is extremely important to take care of those who care, in addition to support networks and political actions, it is necessary to take care of the mental health of those who assume a responsibility to care, such a responsibility that no one learns to do except in that position.

Keywords : rare diseases; vulnerabilities; psychology; bioethics; access to health; mental health.

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