"We're in the same book, but we're in different parts of the book": Dominant and sub-group narratives of life following a Down syndrome determination. (March 2023)

• Record Type: Journal Article
• Authors: Sangster, Sarah L.; DeLucry, Kailey J.; Lawson, Karen L.
• Is Part Of: Journal of intellectual disabilities. Volume 27:Number 1(2023)
• Page Start: 68
• Page End: 86
• Publication Date: 2023-03
• Subjects: Down syndrome -- informed choice -- parents -- qualitative; Mental retardation -- Periodicals; People with mental disabilities -- Periodicals; Learning disabilities -- Periodicals; Handicap intellectuel; Trouble d'apprentissage; Handicapé mental; Périodique électronique (Descripteur de forme); Ressource Internet (Descripteur de forme); 362.1968588
• DOI: 10.1177/17446295221079584
• Languages: English
• ISSNs: 1744-6295

Abstract

Parents of children with Down syndrome (DS) were interviewed about if their experiences raising their children matched their initial assumptions about parenting a child with DS. A dominant narrative was identified, wherein most parents described initially having negative assumptions, which did not come to fruition; parenting their child was not very different from parenting a typical child. There was also a sub-group of participants who disputed the dominant narrative; parenting their child was challenging and the dominant narrative marginalizes that experience. The findings indicate that although for many parents, having a child with DS is like " taking the scenic route " (i.e., it involves a few more hurdles, but often more rewards), this framing is not always applicable. Therefore, health care providers and support organizations should promote a narrative that encompasses the diversity of parenting a child with DS.