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Stigma, caregivers and the child with Down syndrome: a bioethical analysis

Abstract

The aim of this study was to analyze the perception of parents of children with Down syndrome about social stigma and reflect on the theme in the light of bioethics. This study consists of the elaboration and validation of a measurement instrument whose pilot test had 106 participants. Results showed the stigma creates feelings of inferiority on those affected, causing social disadvantage, unemployment, decreased financial resources, non-acceptance, intolerance, social invisibility, less access to health services and worse quality of life. This generates negative effects on the parents’ health. It was concluded that stigma is present in society, so public policies that raise awareness among parents and guarantee their right to health are required. Despite being another element of illness, stigma should not be underestimated.

Social stigma; Caregivers; Down syndrome; Bioethics; Human rights; Right to health

Conselho Federal de Medicina SGAS 915, lote 72, CEP 70390-150, Tel.: (55 61) 3445-5932, Fax: (55 61) 3346-7384 - Brasília - DF - Brazil
E-mail: bioetica@portalmedico.org.br