Down Syndrome: Still a Social Stigma

Abstract

Down Syndrome (DS) is a commonly occurring chromosomal abnormality. The incidence increases with advancing maternal age over 35 years. Over the last three decades, tremendous progress has been made in the medical and surgical treatment of these infants. Nationally, a great deal of resources are allocated to DS infants to improve their growth and development. Yet, the perception remains that the DS infant is still not openly accepted by parents and society, as illustrated by the presented cases. This lack of acceptance creates many complex ethical challenges in treating such babies, starting with fetal diagnosis of the disorder in the womb and moving through early stages after the birth of the baby. We argue that health professionals have the responsibility to help make public attitudes more accepting of Down Syndrome. Professionals should encourage social and community involvement of these children. The National Association for Down Syndrome should be contacted periodically to promote activities to enhance public awareness. To the end of greater acceptance, we suggest a ritual at birth that might improve the acceptance of the DS child into the family and the community and hence help improve social attitudes toward Down Syndrome.

Living with Marfan syndrome: coping with stigma

“…Despite these advances, individuals with Marfan syndrome remain vulnerable to social stigmatization similar to individuals with other visible genetic conditions (6)(7)(8)(9)(10)(11)(12). Stigma is a powerful social construct, involving two fundamental components: (i) the recognition by others of a difference based on some distinguishing characteristic or 'mark', and (ii) the ensuing devaluation of the person with the 'mark' (13)(14)(15).…”

“Yeah that Made a Big Difference!”: The Importance of the Relationship between Health Professionals and Fathers Who Have a Child with Down Syndrome

“…Overall, these results suggested that health professionals have a pivotal role in affecting fathers' experiences and what it meant to have a child with DS. Greater collaboration between health professionals and charitable organizations for DS has been suggested to help raise awareness and acceptance of the condition in health services and wider society (Jain et al 2002), the results of the present study may help to strengthen this argument further and suggest how for fathers in particular positive attitudes can have a significant impact.…”

Family demands, social support and family functioning in Taiwanese families rearing children with Down syndrome

“…Additionally, awareness efforts may enhance public acceptance and provide support for children with DS and their families (Jain et al . ). There are also differences in sample characteristics (e.g.…”