“Did You Know Before?”: Documenting the Lived Experiences of Parents of Children with Down Syndrome in an Era of Widespread Prenatal Testing
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Authors
Riddell, Samantha
Pabla, Amandeep
Issue Date
2021-05-01
Type
thesis_campus
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Keywords
parents , prenatal diagnosis , lived experience , Down syndrome , adaptation , social experiences , Genetics
Alternative Title
Human Genetics Theses
Abstract
In the past decade, prenatal testing for chromosomal conditions such as Down syndrome (DS) has become both more accurate and more widely available. Although rich literature documents the lived experience of families raising a child with DS, no previous studies have investigated these experiences in the current era of increased prenatal testing. Our study examines parents’ social experiences and their perceptions of the connection between prenatal screening and these social interactions, as well as their own views on prenatal testing. Semi-structured interviews with 31 mothers of children with DS ages 3 months to 13 years old were conducted via Zoom and analyzed using a deductive approach. The results showed that most parents in our study had at least one social interaction that highlighted unspoken assumptions about prenatal testing. In their accounts, implicit and explicit inquiries about their prenatal testing status were commonplace. Parents in this study varied as to how they interpreted these social experiences, and their responses were comparable to those seen in previous studies examining the social interactions of stigmatized groups, demonstrating reactive and proactive approaches, both of which have been shown to be effective means of adaptation. Despite some misgivings, parents did not oppose the use of prenatal testing, and many indicated that they had or would use prenatal testing themselves in a subsequent pregnancy. These results provide the groundwork for future research to further delineate ways healthcare providers can best support a prenatal diagnosis of DS and aid in the adaptation process for parents.
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