"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

J Intellect Disabil. 2023 Mar;27(1):68-86. doi: 10.1177/17446295221079584. Epub 2022 Mar 27.

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.

Keywords: Down syndrome; informed choice; parents; qualitative.

MeSH terms

  • Down Syndrome*
  • Humans
  • Intellectual Disability*
  • Parenting
  • Parents
  • Social Group